Your Fertility Appointment Today to Start Your Family Tomorrow

near

You are here

Endometriosis

Endometriosis can be a painful, chronic disease that results when the tissue that is normally inside the uterus (endometrial tissue) grows outside of the uterine cavity. Although it is estimated to affect from 5 million to more than 6 million women in the United States, the exact number is unknown, since many women with the condition have no symptoms. The incidence of endometriosis is approximately 48 percent in infertile women and 5 percent in fertile women.

Since the development and extent of the disease depends on the female hormone estrogen, endometriosis usually affects women in their reproductive years and is rarely found in postmenopausal women. It can affect any woman of reproductive age, regardless of race, ethnicity, or pregnancy and childbearing history

What Is Endometriosis?

Your ovaries release the hormones estrogen and progesterone every month, that make the endometrium grow thicker and ready for an egg. If you get pregnant, the fertilized egg attaches to the endometrium and starts to grow. If you do not get pregnant, the hormone levels drop and the endometrium breaks down. Your body sheds the tissue through the vagina as blood during your menstrual period.

If you have endometriosis, the endometrial tissue also grows outside the uterus in other parts of the body. The most common locations are in the lower abdomen or pelvis (the ovaries, fallopian tubes, the ligaments that support the uterus, the outer surface of the uterus, on the outside of the intestines, and on the lining of the pelvic cavity). Health care providers may call areas of endometriosis by different names, such as implants, lesions or nodules. Endometrial tissue growing within the uterine muscular walls is called adenomyosis. The growths of endometrial tissue outside the normal location are usually not malignant or cancerous.

The problem with these growths is that the misplaced tissues also behave like normal endometrial tissue. They build up each month, break down, and cause bleeding. But unlike the lining of the uterus, the blood from these growths has no way of leaving the body. This internal bleeding inflames the surrounding areas and forms scar tissue which may make it hard to get pregnant.

How Endometriosis Affects Fertility

Most women with endometriosis are still able to conceive, especially those with a mild to moderate form of the disease. Infertility is more common in women with severe forms of the disease. The reasons for a decrease in fertility are not completely understood. It may be due to scar tissue within the pelvis that may distort normal structures, such as the fallopian tubes, which transport the eggs from the ovaries. Or, too much estrogen may have a negative effect on ovulation, fertilization of the egg, and/or implantation of the embryo.

Subjects: 
Glossary: 
Features: 

Comments

When I was 14 I was diagnosed with MVP and soon after I started developing severe pain in my abdominal area, along with filling a tampon in a matter of seconds. went to the gyno and all he did was push around my belly button to make me hurt more then put me on BC pills. No tests or anything. I was on those for 9 months, they did NOTHING, at the 6 month mark he just renewed my prescription, completely ignoring how much I still bleed, getting stuck on the toilet all day because I ruin and stain every pair of undies and pants I have with blood. My period was every 35 days until the pills made it every 21 days. So now I painful periods more frequently. Most the time it feels like a hot knife is stabbing into me and I can't walk, intercourse is painful, even when I'm not on my period I still have sharp pains. My grandmother was diagnosed with endometriosis at 29 and had surgery on it, my mother got it at 27, had her hysterectomy on it, my aunt just got over ovarian cancer. I BELEIVE I have Endo, as I explain to my grandmother and mother. My MVP causes me to have anxiety and these hormone pills give me more depression so I HATE life, I love life but I hate it. I'm looking for a new gyno but I live in the middle of no where and it takes an hour to drive to the one I'm at. I just want to get on with my life, failed the life-long dream of the military because this damned issue. Someday I hope to have children but this pain is almost making it not worth it...

I havent had painful cramping ever, but i have thick heavy period with loads of clots and tissues, I have non-stop annoying cramps in my lover abdomen/pelvic area which sometime my legs feel cramp. I have been to Gyneo several times, he only did pap smear, and feel for stuff, he never say anything to me.. But now I am thinking I have endometrosis because of everyone else realated symtoms, Right now I feel like I someone is sticking me with a needle in both ovaries.. I just got off my period 3 days ago. Another thing I used to have severe pain doing sex, pain sometimes i cant even move.. If anyone else had this problem and was diagnosed can you please reply or email me @ aprilreece07@yahoo.com.. Thank you P.s I am 25 yrs old never had children

I was diagnosed with endometriosis when I was 15 1/2 by then I had already had 4 miscarriages and told I had a 0.0000000001 chance of ever having children I had cysts the size of baseballs in my ovaries I had laposcopic surgery 3 days after my 16 birthday in 1997 2 weeks later the pain was gone i had normal cramps not the massive pains i had before ( plus yes I was young and dumb but....) I had my first of 4 children in 1998 Alot has changed since then but even at that time it was an outpatient surgery I was very petite and lazy thats the only reason it took 2 weeks lol

Since august I've been expierencing a considerable amount of pain in my llq. I have had 3 cesarean sections. Drs after drs have run test. They always blame it on kidney stones yet I've never passed one. 3 weeks ago again in severe pain mid cycle I phoned the gyno. She brought me in that day. Ran an ultrasound did pelvic exam. Called a few days later and said one large area of scar tissue or endo and three smaller lnez. I can and have for months felt a knot in that area. What is the difference of endo vs scar tissue. She wants me back in 3 weeks to schedule surgery to remove everything. I'm done having kids have family history of ovarian/breastcancer and she suggests complete hysterectomy. scared to death. My question is how can she know if its scar tissue or endo just from scans. And should I just go with full hysterectomy like she suggests. Thanks for reading

I'm so sorry you're going through a difficult time. I would suggest getting a second opinion to feel confident you are making the best decision. Best, Claire

Hey my name is Tina I been having real bad pain in my stomach everyday 3 times a day or more its terrible I been getting back pain and when me and my husband try to have sex it hurts to much I tried to tell my doctor but she said its probably irritable bowel syndrome but I don't think it is where can I go to get checked for ebdometriosis?

You should see a reproductive endocrinologist who can diagnose your endometriosis and recommend a treatment plan. Our Patient Care Advocates can hep you find a doctor in your area - there is no fee for our service. Please call or email us at 855-955-2229 or carecoordinator@fertilityauthority.com. Best, Claire

Hi ladies,I'm gyanne, I'm 21 and have been dealing with endetris since my little girl was 8 months old, she's now 15 months. I also know the pain, the constant bleeding, and having no life because of it. I'm literally beyond breaking point of giving up, I'm on the depo needle, and I hate it, I can't take the pill as it makes me sick, and the rod makes my bleeding worse. I'm yet to see the specialist. It's devastated me, my relationships falling apart and I can't take my little girl swimming. I bluntly go through 4 packs of pads a week. I cry as I'm on the edge of depression, I want to be gone. Hugs for everyone x

I really encourage you to find some support from a therapist to help you through this difficult time. There is also wonderful online support at FertileThoughts. Copy and paste this URL into your browser for the endometriosis forums: http://www.fertilethoughts.com/forums/endometriosis/ Also, have you considered seeing another doctor for a second opinion on how to manage your symptoms? Please keep us posted. All the best, Claire

I also have this awful disease, I had my daughter, who's now 15 months and was always bleeding, cramping a few months after j had her, then I was diagnosed with it... I bleed everyday of the week, cry because of the pain, I have no life! The doctors think it's some kind of joke! I've been on depo prov for 6 months now, and I hate it., it's done nothing to help in any way. I see a specialist soon hopefully! It's making life so hard for my partner and me as we want another baby! And it's making it even harder for me as I can't do any swimming! I want to do that with my daughter.... Sorry for the rant, am just over it...

Hi Everyone, My name is Danniella and I am 26 years old. At age 21 I was diagnosed with Endometriosis. I was put on several different birth control pills as treatment, told to skip the sugar pills so I don't have to endure the heavy painful and constant bleeding I experienced. Since diagnosed I have tried over 9 different pills (including Provera which although seemed to mask my symptoms at one point has since stopped working for me) not one able to assist, as well as 2 laparoscopies and associated treatments. I have been bleeding now for the past 5 weeks. constantly in pain, to the point of vomiting. Other people just don't understand, and I hate feeling like i'm just a whinging female who can't handle period pain. I try to push through it all and live my life like there is no pain, but i'm hanging on by the tiniest thread now. I'm losing hope. I'm sick of taking days off for the pain I am, but worse I am sick of not admitting defeat and powering through, as I feel this just makes me worse. Every morning I wake up to what could described as a scene from Carrie with the amount of blood, knowing I am to endure a day full of cramping, pain and further bleeding. I have seen 4 different specialists, who all seem to feel changing medication or another laporoscopy is the option. I don't want to have another laparoscopy and I don't want to continue to have one every year just to monitor these symptoms. Please if there is anybody out there who can offer some advice as to what to do please please contact me. my email is dmilovanovic87@hotmail.com.

I've asked one of our Patient Care Advocates to reach out to you. Best, Claire

I am 28. I recently changed OBs and new OB feels that I have endometriosis. I have always had painful periods but I started birth control pills in high school to help with pain and then stopped to have a baby. I got pregnant within a few months. My periods have been getting more and more painful since my son was born until I was hurting almost all month. I nearly passed out one day and finally decided I had to do something about it. I have opted to not have the laparoscopy at this time. I attempted to get back on a low dose birth control but was feeling terrible all the time. I just started a progesterone only pill to see if it will control the pain with minimal side effects. My son is now 3 and I desperately want to have at least 1 more child. I am fearful that I may not be as fertile as we have used no birth control but the withdrawal method for the past 3 years and have had no pregnancies. My husband is in school full time now so it is not a smart time to try for another baby. We plan to try again in 2 years. I feel like my fertility is slipping by and I am scared to wait to try for another baby but again I can't try for a baby at this time. MY OB told me that since I already have one child I should be fine but I can't help my fears, as irrational as they seem. I guess I just want some support from others that have been or are currently dealing with endometriosis.

Hi Katie - I'm so sorry you are going through this. We have a wonderful, supportive group over on www.FertileThoughts.com. I'd recommend you join the Endometriosis forums there: http://www.fertilethoughts.com/forums/endometriosis/. You may also want to schedule a consultation with a fertility doctor, even if you're not thinking about getting pregnant today. He or she can talk with you about your endo, run some tests to determine your current fertility, and provide you with info on getting pregnant down the road. If you'd like info on fertility doctors in your area, let me know. Or you can call us at 855-955-2229. And please do check out FertileThoughts. I think you'll find the support there you're looking for. Best, Claire

Hi, Im 20 years old and got diagnosed with Endometriosis about 2 months ago. They removed 4 adhesions form my uterus. I have been with my partner for 2 years and we have both decided that if it came down to me having to have children earlier than we have planned then its something we would both consider. I have done alot of research and I know every woman is different but Im just hoping I dont leave it too long and have to wait months or even years to have children or even miscarrage. I have my first doctors appointment today after the operation and have a load of questions for him. Im just hoping he knows what hes talking about! I know Im only young but ive always wanted kids in my 20's. Any suggestions? thanks for listening! Anna

Hi Anna, It is great that you are seeing a doctor and proactively treating your endometriosis. Women with endo are often able to get pregnancy after laparoscopic surgery to remove adhesions and scar tissue. It may not be necessary for you to speed up your plans for having a baby, but definitely address your concerns with your doctor. Best, Kim

Is this normal? Yes I want more kids I am only 29 and the docter said all went well they even test my tubes to see if there was anything blocking it

Hi Tiffany, Are you saying you haven't gotten a period after laparoscopy? How long has it been since your procedure? You should contact your doctor to let him or her know that you are concerned. Best of luck, Kim

I have endometriosis very bad, it returns like clock work every 2 years, and I have to have surgery every 2 years. The last surgery was pretty bad, I had a cyst the size of a grapefruit and endometriosis wrapping and enveloping my left ovary and blocked my bowel, like a huge spider they said covering the area and blocking areas. But, this time, it was last January, I had surgery, now I have this horrific pain in my back, like a elephant is sitting on my lower spine, constant pressure on the left side, constantly constipated, whether I take Milk of Magnesium, You name it I override it, and do not go for approx 7 days and my abdomen swells like a balloon. I am tired of being sent out for ultrasounds, this never shows up, on those tests. My Dr. admits everytime he does the surgery, he admits how bad it really was. Now, I am putting my foot down and demanding surgery and no more wasting time with tests that show nothing or send me to physical therapy now that I have a herniated disc. I feel this endometriosis is wreaking havoc and needs to be taken out of me. Please if anyone has has any additional advice please, I am willing and open to listen. One thing, my threshhold for pain is nothing anymore, this pain is constant and every single day!!!! Thank you for your time and listening. Colleenann

Hi Colleenann, I am so sorry you are experiencing this. It might be helpful for you to get a second opinion and work with a fertility doctor who specializes in endometriosis and can therefore be a little more aggressive in treating you. Give us a call at 1-855-955-BABY (2229) and we can help you connect with a fertility doctor in your area. Best, Kim

Thank you Kim, I will keep this in mind, I am finally getting booked for surgery within the next week or so. I will definitely keep this in mind, because my Dr. told me I have to seriously think about having or trying to conceive sooner than later. I want my dream to be a Mom to come true too!!

Hi I've just found out I have endo from the pain I was experiencing found out I have a choc cyst of left ovary, I panicked doctors knew nothing so I done my own research and I found out that endo feeds off to much Estrogen in the body causing mood swings( I suffered really bad ) pain clotting huge clots fever very emotional the list goes on!!! But I came across a natural cure called dim plus , I've been taking it for about six weeks now and I feel great my last period was pain free no clots and my emotions seem to have balanced out , find out tomoz in my next scan in my cyst has shrunk or grown , but the dim plus are Estrogen blockers in a sense a natural form so check them out as they have helped me amencely xxx good luck xxx

hi i am 42 and was diagnosed with endo 1 year ago, it has truly ruined my lifestyle. i cant do any type of activities with out me limping and being in extreme pain that day. and i work on my feet moving and lifting all day. i cant even workout. i have five children, 24,22,20,19, and 17 years old. c-section with all of them. two where premies, i have endo, ovarian cyst and fibroids. but the endo is unbearable i literally cry every night from the pain. i cant believe that there is nothing doctors can do. this is horrible. i was 100% agaist a hysterectomy but is truly considering it. i cant live like this any more. i have grandchildre to kep up with...

Hi I've been diagnoised with endometriosis two years ago. I was only 13. And now my health is decling and I'm gettin more sick and having bad bad bad back pain lower adomen pains and I don't have a menstrual period. I have a blood clotting disease. So please if anyone talk to me if you got and feel the same I do pleas

Hi love33 - You are so young to be going through this - I'm so sorry. First, you should see a doctor who specializes in treating endometriosis. S/he may be able to help help you with the pain you are experiencing. In addition, you might want to find support online or in a support group - other girls or women who are experiencing the same thing you are. I wish you the best of luck.

Claire

I have been diagnoised with endometeriosis since 2008 I know how you all feel I have delt with this since I have started my mensteral cycle and it is awful I was told that it was kidney and bladder infections. I have delt with this pain for so long and have been on alot of medications to control it and keep it from growing, I have delt with it so long I am able to deal with a large amount of pain but I still hit the floor or just curl up in the bed because I am unable to move so all my prayers go out to all that have this awful stuff and those that are not able to have children I am only 23 yrs old and have no children yet of my own lost one in 2007 because of this disease so I know how you all feel and I am so very sorry for all of us who have it and have to deal with the pain and agony

I was diagnosed with endometrioses last year. I had a laporoscope in February this year. After the laparoscope my gynae said there was some endo on the outside of my bladder. He also put a merina in for me. He said he couldn't remove the endo on my bladder because he might burn a hole in my bladder. My symptoms have not eased up after the laporoscope. He then put me on the injection as well. Although I don't bleed anymore I still have permanent lower back ache and pains in my legs etc. Intercourse is also still very painfull. My gynae said he will try to get a urologist to do a combined operation to see if there is endo inside my bladder too. It is very painfull when I urinate. He could not find a willing urologist to do a combined provcedure. I went to see a urologist on my own. He did a cystoscopy and internal urethrotomy a couple of days ago. He said he couldn't look on the outside of my bladder but there is no endo inside my bladder, however my bladder pipe was ver narrow which he had to make bigger, but he said it might happen again in six months time. My question is: If I have endo on the outside of my bladder, who should do the op to discover it and remove it, the gynae or the urologist? I don't want to go for ops every six months. I believe the narrowing of my bladder pipe could've been caused by scar tissue, which is probably a result of my endo? I don't know what to do anymore. I pay cash for these ops every time and it's costing me a fortune asides from the emotional stress it causes.

Anita.

My name is Jennifer and i've been dealing with the same issues since i was 12 i am now 27 and just finally had surgery last year for my endometriosis. They said that i had a lot of leisions and that my left tube and ovary were fused to my lower bowel. After years of having the doctors tell me that i am litterally crazy and put me on a bunch of meds for it, or that all women have problems. I have a very long family history of this disease in whice most of the women on my mothers side have had a full or partial historectomy? by the time they were 35, one of the obgyn's i had was even the same doc as my mother and her mother and still didnt believe that i had it. I have tried all different types of birth control and even tried the lupron shot whice i had horrible side effects from. I am currently not on anything for the endo or for the pain. I've been dealing with so much emotional stress from wanting to have a baby but i cannot get pregnant to save my life, whice has destroyed my relations with a lot of my friends. its hard for me to know that ALL of my friends (who are all younger than me) are pregnant or already have children and i cant. I want children more than anything and this is causing me to become very depressed over it.I found this web site by accident and it has been so nice to hear and know that I'm not alone dealing with all the crazyness of this disease, this web site has helped a lot so far with my emotional stress of not getting pregnant. If anyone has any advice they would like to share please feel free to contact me at jinnjuice1984@yahoo.com i would really love to hear from someone who understands how i feel and what i'm going through.

Hi, is there anyone out there with endo that has had a successful pregnancy with IVF?? I knew getting pregnant would be difficult with my stage 4 endo, so my husband and I are seeing a fertility specialist. He is telling us that with my endo, IVF is the only course of action. I have not seen a lot of research related to endo and successful IVF. If anyone cares to share, I would greatly appreciate the insight!!

Hi Everyone,

Reading through this post and the comments reminds me of so many of my patients.

The pain from endometriosis can be debilitating. Sometimes the laproscopic surgery only gives temporary relief. And ablation usually means no children. Not a happy choice for many younger women.

The drugs can control symptoms, but as many of you know, the moment you stop, symptoms often return.

There isn't a one size fits all solution. When there is improvement, I normally see it using one of these approaches:

  • Acupuncture
  • Chinese Herbal Medicine
  • Individualized Dietary Modification

Obviously each person is different, so results vary. However if you can find an experienced practitioner, you have a shot at relief using the above approaches.

All the best to each of you,

Dr. Bruce
http://www.RenoAlternativeMedicine.com

I to suffer from endometriosis. It was found when I was 17 after having a c-section with my first child. In 2005 I had a laprascopic procedure done because there was a mass on my ovary. Well during surgery they realized it was a cyst and it had ruptured before surgery. They to said I had severe endo and lasered what they could see off.. I have horrible periods I sometimes lose big clots of blood. And I have been told by doctors I was exaggerating with the size. I dont see why anyone would want to lie about it I just want to stop hurting. I was just at the hospital several nights ago for severe pain again they tried telling me I had a severe UTI infection but I have not had any symptoms from that. I told them I thought maybe I had had a cyst since I have been through this pain before they told me no they would give me a CT scan to look for Kidney Stones. Well guess what they find a cyst on my left ovary no Kidney Stones. So all they tell me is see a doctor. My mother passed away almost 4 years ago she had severe endometriosis and refused a hysto at age 30. It got so bad that she finally decided at 46 to get one and by that time it was to late she went in to hospital a week before her scheduled hysto and they found cancer completely all over her reproductive system. If she would have listened and had the hysto she would prob still be here. I urge everyone please take care of yourself and if you cant find a doctor that believes you or will help go to another one. I wish everyone luck and hopefully I myself can have some relief soon.

The growths of endometrial tissue outside the normal location are usually not malignant or cancerous. One has to be very careful during this time.

I am twenty nine years old and was diagnosed with stage 4 endometriosis last year. I was on the mirena iud. I have had severe childhood sexual trauma. My pain is so bad that I cannot move sometimes. I believe that the doctors in my community are part of a masonic order whom would rather see my real health problems ignored while my on going bi-polar and panic attacks remain unsuccessfully treated despite current care and years of negligent care. I don't know what to do. I cannot find help anywhere. I am a medicaid client. Most of my family is dead and my ovaries don't matter to anyone but me and everyone says they cannot do anything to help me. Please tell me what I can do to manage this pain on my own because I'm all I've got to rely on to get better. When I become angered or sad my ovaries hurt and I've been laughed at for that. Please help me.

I want to let everyone know Do Not GIVE UP! I have had this condition sense I was 13. sometimes the pain would be so bad nothing would make it stop and it would knock me into the floor in fits unable to control my body crying, i have even woken out of dead sleep in pain. my doctors always told me i was making it up and there was nothing wrong. when my bleeding got extremely heavy at 17 my memaw, my savior, took me to a specialist. i had blood test ran for months where they found out i had a thyroid disease, which i later found out made it worse. by this time i had tried the pill, the shot, and the nuva ring to no avail. it only made every thing worse. i was in constant body pain and and sick. it made my mode intolerable. at 18 i tried the mirana which helped for a year. after that the mirana started making me bleed and put me in pain to where i could not move and my fiancée took me to the emergency room to get it removed. finally after seeing another specialist they found my problem. i had endometriosis.to help control it i was put on the patch. but the type i had made my hormones crazy and i had the same problems. after about a year of not being on birth control and in pain, i gave up. they said my option was surgery. i was told getting pregnant would be hard. i was 20 looking at the possibility that i would never have children. i was scheduled for my first surgery in one month when i found out i was pregnant with my first child. the doctor was surprised. he told me it might not cure it just make it better. i am to start the shot up again immediately after i give birth to keep it under control. if it stays that way i wont have to have surgery. im currently 5 moths pregnant and here to tell you that it may be a rough road but keep hope. it will work out in the end.

Hi, I've been diagnosed with endometrioses last year. I've had the laporoscope in February but they could not remove all of it on my bladder. I feel no difference in the pain. My doc put a merina in for me which is also supposed to reduce your bleeding and the pain but so far no luck. I still have pain all the time and struggle badly to urinate. The doctor said it will take 3-6 months for my body to adapt to the merina, but in the meantime I live on painkillers and it has a very bad effect on my relationship. As far as I'm aware no other female in my family have suffered from it. I normally use a heating pad as well and painkillers. The pain does usually go into your back and legs. I've even experienced pain in my arms before, which could be from tensing your body when the cramps comes and goes. Only way to describe the pain is that it feels like someone stabs you from the inide. I am 33 now.. the doc won't do a histerectomy because I 've never had a child. I doubt that I ever would out of choice. Good luck...

Hi, Ive only been diagnosed in the last year. I got my period much later than Everyone at my school and I was training heavily in dance at the time. I didn't have a problem at first and when I turned 19 it started. I was only having problems everytime I got my period then it became weekly. I am always in huge amounts of pain in my stomach and I'm bed-written I can not stand up. I've been on 2 different pills , anti depressants to regulate my moods, and now I'm on the depo shot. It has worked bit when it comes to that in between time from the shots I'm in more pain than I ever was. I'm so worried about the fertility side of things. I've always wanted to be a mum. My last partner and I were really bad with contraception but I never got pregnant. I am a very little sized girl but tallish.

I'm A single Mother of 4.I have a sever case of endomitriosis. It's hard for me. Because I have no insurence and it's geting worst. I have to takecare of one of
y child is disable and I have to carry her every were . And with
my condition makesit harder for me to care for my diseble chid. Is there any one who can help me. It's so hArd . I try bith control methets. They didnt work for me. I'm just so frustrated Of. My Illnes.

I was reading everybodys stories..and hear i'am thinkin 2 my self why me..I'am a 31yr old and i was diagnosed with Endonetriosis..When i was sixteen i had my right ovarie removed due 2 an ovarian cysts tha size of a ball..I was told there was a chance i waould'nt have kids.I had a kid at 22 everything was fine until 2yrs ago i started 2 have periods with really bad cramps..i've never bleed for more than 3days it stared 2 last a week or more.. my blood went from a light color to a almost dark color..I've been on all kids of birthcontrol pills nothing has worked..so i went to the dr lastweek..and had an D@C,Hysteroscopy,Laparoscope done this week the dr. tells me that i have Endometriosis and i can take Lupron injections to ease the pain.But cause they found other cysts on my left ovarie he think i should have a full Histerectomy..I'am scared and don't know what to do..

Wow, I just came upon this site and wanted/needed to add my experience(s) here in support. I'm 28, no kids, and was JUST diagnosed with endometriosis. However, I've been dealing with it since I was 12. I just didn't know what was wrong with me. I've gone my whole life with this unbearable pain, only to be told by several different doctors that it "just happens to some women" I cannot tell you how many doctors even treated me like i was crazy, or how many times i was told to take midol or advil. NO... this is SERIOUS pain! it affects your life in ways most people cant imagine. Many people will never be able to understand not being able to stand up straight, let alone walk. vomiting so much you end up weak or in the hospital, being able to do nothing but curl up on the floor and cry. It took until i was 17 for them to even label me as having dysmennorhea. Even still, I was simply told that some women "just have it bad" My whole life this went on. I almost didnt graduate from high school because of all the days missed, and was even told by a school board official at my appeal that "it cant possibly be THAT bad". I would bleed uncontrollably, couldn't eat because I couldnt hold down water, and the pain (as you all know) is excruciating. every so often, a different doc would try a different drug, but that was it. It continued year after year, and ironically, the only doctors who were helpful, or at least sympathetic, were male doctors. Finally, I switched doctors one last time. Right before xmas of this year, I went to the doctor, while there, I was told that from my symptoms, especially the heavy bleeding and leg pain, that I should get an ultrasound done, and be checked for endometriosis. I'd heard the name before, but had never really known what it was. I was relieved to even have a direction. I was referred to a doctor in my area (male doctor) and when I went to see him, I was immediately impressed. before any kind of examination, he sat down and talked with me... not TO me... he asked about what i go through, and explained the different things it COULD be... then we had the pelvic examination after which, he gave me information to read and scheduled an ultrasound. after reading up on endometriosis, I didnt need an ultrasound to tell me that was what i had. I went back for the ultrasound, and immediately saw the 7cm chocolate cyst on my ovary. I knew it was my right one, because thats where all my pain is centralized. My doc immediately suggested a laparoscopy. It is scheduled for March 7th, and I have to tell you. I nearly cried. After 16 years, there's a CAUSE for all i go through. Its not just some random occurence, and i'm not crazy... of course surgery scares me, and I know endometriosis doesnt just "go away" but i whole heartedly believe it will help. after all this time and all this pain, even 1 year of relief will be a blessing. I also believe that we women with it, must support each other, because It can wear on you emotionally, to have to go through this, and not have many people understand what you're going through. If anyone needs to talk, please feel free to email me at rascalsangel@hotmail.com

i have raised four grandchildren, my 15 yr old who looks 20 ish started at 12 yrs old...she has suffered worse than anyone can imagine except for those of you who have experienced the same...i have had to take her to the ER and i have mopped vomit and tried heating pads and everything, DR. AFTER DR... finally, she is going to a female specialist, though the Dr. will not do a vaginal exam, because, of her age, she has done ultra sounds and found left over fluid from cyst bursting....she was put on a birth control pill that she takes everyday of the month, and now she is experiencing terrible infections, the monthly pains have gone, she will have lower back pain slight...but, the side effects of the pill really worry me....she has been diagnosed today with Raynaud's...and she has to go to her female Dr. now for more test because of the vaginal infections, the Dr. thought she had a yeast infection last month and prescribed her 1 pill and it didn't work...now, the infection is even worse...i think, she has Endometriosis...the symtoms did not occur until after the very high dosage of birth control pills...but, if she doesn't take the pills, she has to go to the ER every month, because, the pain is so severe...if anyone knows of anything she can try please respond...by solving one problem it seems too many others have occured....thanks,

I have had painful periods for much of my life but never did much about it except take Ibuprofen. In 1998 I was diagnosed with a spinal tumor that was benign thank God, but took over a year to find and was on the verge of being sent to Mayo to try and figure out what was wrong with me. I had lost almost all function in my legs before they found it and my youngest son was 6 at the time. I thought I was dying and the Neurologist thought that I had Multiple Sclerosis so I was ecstatic when it was diagnosed as a tumor that could come out. I asked what caused it and the Neruosurgeon said "no one knows, but if it comes back we will take it out again".....Hmmmmm I was thinking, then he added that the tumor was "reactive to Estrogen". What does that mean I asked and he would say no more just that Estrogen caused it to grow! Flash forward to 2001 when i began having severe pains in "stomach" and side and SEVERE bleeding during periods. Eventurally it turned out (2005)I had 5 fibroids and my uterus was the size of a 5 month pregnancy. During this time I bled so heavily I had to wear the heaviest tampon available and a super pad and I still bled thru about every hour the first 2-3 days of my period and had pains that rivaled labor contractions and I often put my head on my desk and cried till pain meds kicked in. I chose uterine embolization thinking I was closing in on menopause and the estrogen would slow down and the fibroids would shrink on their own from then on out.
Last year in 2009, 4 years after the embolization the pain came back. Like labor pains again, pain in legs, bleeding not as severe but unimaginable pain again. Foolishly I again chose the embolization because I thought it was easier with less down time, less invasive and surely was near enough to menopause now to not have to worry anymore.
Wrong, Wrong, Wrong. In late spring of 2010 my uterus took on a life of it's own. I began getting sick every single afternoon for NO reason. Lay down and feel better then go to sleep and be woken up by labor pains again. I began having 2 periods a month with each one having a set of symptoms that lasted abouta week before each one began. I couldn't sleep at night in anticipation of the pain when I didn't have it and couldn't sleep because OF the pain when I did have it. My legs and hips began to hurt so bad I couldn't lie on my side at night to sleep. I also developed pain in my rectum and very low in my back. I was sleeping no more than 4-5 hours a nite at best and walked around in a haze of pain and sleep deprivation. I had begun writing symptoms on my calendar the year before and by September of 2010 I was tying all the pieces together. When my legs swelled up with severe pitting. I took the 7 pages I had hand written and went to my dr. By that time I had researched exhaustively and suspected edometriosis. I was sent to an OB-GYN who put me on Lupron Depot monthly shots (which cost $689/month and our insurance didn't pay anything for the first 2 shots!!!! The shots were very effective and when I told my Ob-Gyn he seemed very surprised for some reason. I guess he just thought it was the fibroids or it was all in my mind????? Anyway last week the day before New Years Eve I had my uterus, right ovary (with endo tumor on it) and fallopian tube and the left fallopian tube removed. Dr. told me later that he had removed all the endometriosis that he found and that there was a major amount of it behind my uterus down by my back in that rectal/vaginal pouch!! I am sooooooo glad I had it taken out even tho there is a risk of it growing back since I kept an ovary. I am going to use what i know to try to keep it from coming back and fight for help if it ever does come back.
I have talked to a LOT of women in the health field and it seems that a LOT of doctors do NOT want to deal with endometriosis and will refuse to diagnose that and instead prescribe stuff that doesn't work for most women but leaves them intimidated or embarassed to keep seeking a real treatment that works for them.
I think a lot of it is the fear of malpractice in the case of endo. If they go in to look in order to diagnose and it's all over or there is severe scaring it seems that they want to get as far away as possible. Endo can be very severe and I think they are afraid of damaging other organs while operating and don't want to take the risk.
I want to tell anyone who reads this: Don't be afraid to ask for help, Keep a journal of symptoms religiously and review it often. When you feel like you must be crazy cuz no one will believe you, find a new someone to explain your symptoms to. Don't be afraid to try medications but if they don't work, be assertive and say "this doesn't work and I'm in pain and I need help". Exhaust all the alternatives your dr. can provide and then ask for some more. Ask for referrals and ask for pain meds.
You are not crazy and you know your body better than anyone. Life should be filled with love not pain so don't settle for what someone else says you should!!!!! Be Strong and God Bless.

I have been dealing with endometriosis for years and i have tried what i feel is everything. from hormone therapy, laprascopic surgery, anti-inflammatory drugs, pain meds, and last was a partial hystorectomy. i am still having severe pain all the time even during bowel movements. at my last appointment i spoke with my doctor about having a complete hystorectomy because i have heard so many women say that it was the best thing they could have done and that they are finally pain free. but my doctor is nit to thrilled about doing one on me. he says only 75 percent of all women who suffer from endometriosis are fully cured after a hystorectomy and some still have pain after. i am so frustrated and am at my wits end with this. Can someone help who has had a full hystorectomy i need some advise on this. please!!!

Herbal regimens....I have been disabled by this dis-ease for the majority of my adult life.... traditional medicine/surgeries wasn't working for me either... I finally decided to seek advice from an alternative medicine professional.... I am now on a strict herbal regiman...I stopped consuming dairy...red meats and sugar as much as possible.....and started consuming large amounts of water...ladies I am out of bed...not totally out of pain but now I am hopeful... red raspberry leaf along with some other herbs has been a gift to me from mother nature herself..my heart is filled with love and compassion for each of you enduring this painful life altering dis-ease. I know the difficulties in your day to day life because I live with them too...stay hopeful, seek alternatives from a professional only...I hope that someday we can all live a life that is not filled with the pain and all the other discomforts that this dis-ease bestows upon us...again I also suffer from this dis-ease and sought professional alternative advice... never take anything without professional advice..... my prayers are with you!

I am 23 and have endometrosis. well my fiance and I are trying to conceive a baby. however we have been failing for months. I want to have fertility shots but we do not have a lot of money. does anyone know of any assistance programs that offer some type of help. I had dye ran through my tubes and the x-rays say everything is fine. Has anyone tried this? please let me know. I am considering have my female parts removed if this does not happen for us! I am begging you please help!

Hi - I know what a difficult time this is. You may or may not need fertility drugs or fertility treatment once your endometriosis is treated. Your first step is to find a fertility doctor - also known as a reproductive endocrinologist. A fertility doctor can do a thorough exam and history to determine why you're not getting pregnant. And if endometriosis is the cause, they can offer treatment. There's a find a doctor search on every page of FertiltyAuthority to help you get started. Schedule a consultation to find out what's involved. If and when you do need fertility treatment, there are a number of financing options that may be available to you. There are several articles with info on that here: http://www.fertilityauthority.com/costs.

Claire

i was diagnosed with endo a couple of days ago when i went for my following up but had the lapro done 11/12/10 had the cyst removed my period been on since then and i didnt even notice my period was on until i use the bathroom but the doc said i had severe endo but since the cyst removal i dont have no pain like i used to i waiting for the lupron shot really dont want to take it im scared im just hoping that it will kill some of the endo off so i will be able to have kids my doc said its a possibility but i believe in god and he has the final call on everything but while im waiting for the shot i have a natural cure book and it tells u how to cue endo so i will be doing that and if that works for me nooooo lupron for me!!!!!!!

I was diagnosed with endometriosis at age 21. I had very severe pre-cancerous cells covering my cervix and uterus wall. My doctor at the time said that he would suggest a complete hysterectomy if I wasn't so young, but that no dr. would perform it at my age unless it was full blown cancer. They performed a LEEP to burn them off. Now for the past year I have been so sick it is ridiculous! My stomach stays swollen so bad I look 6 to 8 months pregnant. I am in sooo much pain, but most of my pain is in the upper abdomen and I vomit pretty much constantly. I've been to several doctors, they either think it's all in my head or I want drugs. My ob-gyn is going to put me on the Lupron. Does anyone else have the pain in the upper abdomen and the nausea and vomiting?

I have pain every since my tubal which my tubes where clamped and I have pain since that my doctor today told me that I may have Endometriosis. I had u/s after u/s and different doctor told me different and I had a ct scan and etc now my new doctor told me about this so I hope everything I will found out soon whenever he can get me in to do the Laparoscopy I hope in Decmeber if not soonier as anybody had this problem if so please write me on my email address at countrybabe_2002@hotmail.com So please help me if u can!

I had endomitriosis several years ago when my daughter was 3. I remember the pain and the bleeding. It was so bad that while I was at work customers would come in and find me curled up on the floor in pain. The bleeding was worse in my case, I was bleeding all the time, I didn't get any regular cycle. For three years I had excessive bleeding and pain. I am glad that some can get a little comfort from the depo or the lupron. It seemed that nothing worked for me and now my daughter is 11 and I am worried that she might wind up with the same problem. I don't think I could deal with my daughter hurting as bad as I did. When I was going through this whole ordeal it seemed like no matter which doctor I talked to they kept telling me it can't be that bad. Well mabey someone should rip their insides out and see how they feel. To those of you who are considering a histrectamy, I have had one and I am glad I did. I do sometimes wish I could have had another child, but if it means putting that baby in danger because of this horrible thing, I am glad I can't.

HI,

I was idagnosed with Endo 8 years ago, but I suffered for 20 years. I also had a fibroid the size of a canalope. I had severe bleeding, frequent urination, painful bowel movements, painful sex and back pain. I missed so much work. It was hard because some people think you're "faking" and that it's just a period and you should pop an advil and get over it. I found a wonderful Dr who taught me how to take Aleve before my period even starts to help manage the pain. You have to build up the pain meds in your system for a day or two so they'll work as the pain is coming on. I also had a Rx for Naproxen wich worked wonderfully. If you are in constant pain ask your Dr. about this.

After 3 surgeries for fibroid and cyst removal the pain in my back and frequent urination stopped, but the severe period cramping was still there. The only thing that took that away was prayer. I am serious. I prayed to God for healing and I got it. Now, my husband and I are also praying for a baby (my first). With the help of Dr's and prayer I think we'll get there.

Hope this helps someone.

Pages

Add new comment

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
  • Allowed HTML tags: <a> <em> <strong> <cite> <blockquote> <code> <ul> <ol> <li> <dl> <dt> <dd>
By submitting this form, you accept the Mollom privacy policy.