Endometriosis Stories - Page 32

Name: Mattea
Email: mgmundstock@gmail.com
Location: United States
Date: May 2010

When I was 13 years old I started having severe pains on my lower right side. I went into my doctor and had a few tests done. My doctor was almost positive that it was appendicitis. I was sent to see a specialist to confirm this and had my first ultrasound. The specialist told me that there was no possible way that it was but it was just constipation because a substantial amount of stool was found. I started taking miralax which didn’t help at all. All is did was make me nauseous and have diarrhea. I did it for about 4 months and finally went back to the doctor as the pain continued. I did several tests. This repeated itself several times. I then went to an allergist and tested for an allergy to many things including dairy. The results came back negative but I decided to try going dairy free for a while. I did this for about a month and it didn’t help at all. I then went to see a GI. I had an upper-GI series done, which didn’t show anything. The GI doctor thought it could possibly be chrons disease. I had a colonoscopy. I was 14 at the time! We didn’t find anything from that but still thought chrons was a possibility and could develop over time. I then lived with the pain for the next few months and wasn’t sure what to do from there. In November, I was at water polo practice when I got out of the pool to go to the bathroom because I wasn’t feeling well. I was in that horrible pain. Sometimes the pain would make me throw up. I had awful diarrhea. I called my mom to come pick me up because I was in such bad pain. I was rolling on the floor because the pain was so bad. I then threw up 8 times. I went to the emergency room and took a urine test and blood work. The ER doctor said that it was either a cyst on my ovaries or ovarian contortion. I had an ultrasound. They weren’t going to check my appendix until my parents asked them to. Sure enough, I was in surgery twenty minutes later to have my appendix removed. They also found three cysts on my right ovary. The worst part was that I missed playing in my state championship water polo game that was two days after my surgery. I was painless for about a month and half after surgery. I thought it would be the end of my pain! But then I started having pains in January. I then decided to go vegan. It was something my doctor had always discussed me doing. So I was vegan for almost 3 months until I had awful pain again. I had an ultrasound done again with it not showing anything bad. I went to see a gynecologist and was put on birth control. I am doing birth control for three months and so I have a follow up at the end of June. We are thinking it is endometriosis and as I read more about endo it starts to make more sense. I just really hope I figure out what my problems are. I had pain again yesterday and it is during my period. The thing that scares me the most is not being able to have children. It’s so ridiculous that I’m 15 now and worrying about having children! Well it helps to just talk about everything and let it all out. Also, I hope that people that have gone through about the same thing that I have, read this, and know that they aren’t alone. Well I’ll let everyone know what happens after my appointment. Pray for me


Name: Birdie
Email: Angelndisguise_09@yahoo.com
Location: United States
Date: May 2010

Hi SMR, I can relate to your story. I'm now 37 years old and I as well as most of us can relate to your story. I started my cycle when I was 16 and my severe cramping began that very first time. I have had so far 3 procedures done and nothing has helped ease the pain. I did the Lupron shots after having my uterus scraped and that was a nightmare.I went through menopause at the age of 25. My poor co-workers had to deal with the horrible mood swings, but the hot flashes during the nights were the worst part I think. It seems the older I got the worse the pain and symtoms because. What was sad for me is that my friends and co workers thought I was always lying when I would tell them that I was cramping because it seemed like I was having my cycle every 2 weeks. What they didnt' and some still don't realize is that I have 2 weeks of symptons, which include severe cramping and my stomach swells 3 times it's size. The swelling is so embarrasing I refuse to leave my house unless I have to. I have had to purchase maternity clothes to wear to work when I'm having "Girlie Time". No one would believe me and thought I was poking my stomach out so I started taking pictures of my stomach every month. The swelling has actually gotten much worse over the past 2 years. I recently went to my GYN and showed her the pics and she couldn't believe it. Her exact words were OMG...what do you do for clothes every month if that gives you any idea how big it was. I looked as if I was 6 months pregnant. Can you imagine how uncomfortable and painful that is. My rib cage is stretched and I'm now taking Hydrocodone for pain. I've been on every pain medication you can think of, Darvocet, Percocet, Tramadol, Naproxen 550, and IB800. You would think I have a drug problem, but my GYN knows and understands how painful Endo is. Others are not so understanding. I have 5 sisters and 3 of them have had Hysterectomies. 3 weeks ago when had my yearly pap I asked if we could discuss these options. I originally wanted to have kids, but that doesn't seem likely. I'm single with no candidates in the picture and I'm not thinking that will change anytime soon, but it's possible I suppose. Unfortunately my GYN is my biggest fan and wants me to find Mr. Right and have a baby. She was a bit upset when I asked and said we have to at least try. I just don't know how much more of this I can take. Nothing has worked. I stayed home from work today because of the horrible cramps and had to tell my boss (who's a guy) that I had to come home for female problems. He's reply "TMI". It's a good thing I have a good relationship with my boss so I laughed it off. While sitting on my sofa I surfed the net for pictures and blogs to see if anyone else was experiencing the severe stomach swelling. If there is anyone else please e-mail me. I have to schedule a sonohysterogram within the next week. My last ultra sound showed I have Fibroids and polyps as well as the Endo. Hopefully someone out there can tell me what is causing the severe swelling as it's still a mystery. Gas and water gain has been ruled out. Thanks


Name: Jay Leon
Email: nessalee143@aol.com
Date: May 2010

Hello, I have stage four endometriosis and have lived with it for many many years. I have surgery years ago and they removed my left ovary and put me a drug called Lupron. It was the worst medicine I ever took and the side effects did a number on me. I have done everything. I got a gym membership and even changed my diet and gave up dairy red meat and soda etc. I feel like I am going crazy and I don't know what to do. I am on my cycle now and yesterday the pain as always was a level ten. I feel like I a dying every time I am on my cycle. It feels like a knife stabbing me and there is nothing they can give me to help my pain. Please someone tell me what to do. When I know my periods coming i get so afraid just thinking of the pain. I sit and cry for hours. I have a cyst on my right ovary and the pain it causes me I cant event describe to you. My whole left side hurts when I am on my cycle and I cant walk because it is to painful. Please someone tell me is there something new I can try? I can get on birth control it doesnt work for me we have tried everyone you can imagine. Please someone help me. I feel like I am going crazy and no one understand my pain. If anyone has any information for me please email me. Thanks for your time and attention. email: nessalee143@aol.com Jay Leon


Name: Elle
Email: sexyma8929@yahoo.com
Location: United States
Date: June 2010

I was diagnosis with Endo in 2008 when I was 18. Prior to my diagnosis ('07) I had chronic pelvic pain,I thought perhaps I had an STD so I went to the Gyn to get a check up and my pap came back positive for HPV. I thought" that's the reason for my pain", I told the doc that I was having pelvic pain and she said, HPV doesn't have symptoms; and true enough it doesn't. I tested again in 3 months and everything was fine , however I still had pelvic pain I complained for a year about my symptoms. They told me it couldn't be endo because I didn't have chronic bleeding and it has to be associated with your period to be endo. I suggested a Laparoscopy to diagnose me and they blew me off again and again. SO,I decided to do research to narrow the possible conditions I could have. And Endo was at the top of the list because you can inherit from your Mother to my luck, my Mother had a very bad case of endo in which they told her she'll never have children ( Docs don't know it all, I believe in miracles). Fast forwarding to the present, my current doc has done 2 Laparoscopic surgeries, I've been on depo provera for almost a year and a half and still no relief. The last surgery she burned the scar tissue and removed the fibroids on my uterus. She doesn't know what's wrong with me. It's starting to interfere with my life I'm in a relationship with the Love of My Life and I can't be intimate with me because of the pain, it's awful I can't bare it. I have chronic fatigue, hot flashes, chronic pelvic pain( constantly), there isn't a day that goes by that I'm not in discomfort. I want to lay down that's the only way I'll have some relief. I just want to be Normal again. I'm not going to worry or panic about getting pregnant or if I can become pregnant. To be honest I don't know, I’ve never tried, but I'm sure all things will work together. I've heard that having a baby could help with the endo, IDK cross that bridge when I get there, I suppose the only choice for me now is to change my eating habits and take better care of myself.


Name: Stephanie
Email: stephanie@dominionlandscape.com
Location: United States
Date: June 2010

I just found out I had endo in August when I had a laparoscopy. I am 29. Apparently it was pretty bad even though I'm one of the lucky one's - minimal (and sometimes moderate) pain. I have strange aches and twinges throughout the month, but b/c I could never classify it as real pain, I didn't think anything of it and thought all women felt that. It is uncomfortable for sure, but not the excruciating pain that so many women experience. Now I know that it is not normal to feel uncomfortable in the pelvic area off and on throughout the month and I can contribute it to something. What started the whole thing was that my husband and I were not getting pregnant, even though we are both healthy and young. Not it has been 9 months since the surgery, and we still have not been able to conceive, even with clomid-IUI cycles. This summer it will be 3 long years of trying-to-conceive. We are still hoping, but after meeting w/ our fertility dr. it looks as though we will need to either do IVF or adopt. Whichever way we choose, I still hope I can conceive naturally sometime within the next 10 years. It has been difficult, especially since most of my friends are having children. I have 6 friends who are pregnant right now in fact! Thanks for all your stories. It's so nice to know you're not alone.


Name: Sylvie Yourt
Email: Sylvie_Louise@hotmail.com
Location: Canada
Date: June 2010

I was diagnosed with endometriosis at 16 and I am now 32. I've been struggling on and off with excruciating pain for over 16 years. I was lucky enough to have 2 lovely kids with assisted fertility treatments. I've tried all possible treatments out there and had 5 surgeries with some relief but am struggling again with alot of pain. I am presently on mirena with no luck yet but it's only been 2 months. I have my period for 10 days now and spotting every single day. I'm seriously contemplating a hysterectomy. Anyone else experience this.


Name: Sally O'Carroll
Email: sflowerkids@hotmail.com
Location: Australia
Date: June 2010

I remember going out with my sister and one of her friends over 20 years ago and hearing about how someone they knew had this terrible disease called endometriosis. They talked in hushed voices about the horrible hormone treatment she had and how she probably wouldn't be able to have babies. Later I worked for an international pharmaceutical company and my close friend marketed a hormone treatment for endometriosis. She would tell me horrible stories about huge chocolate cysts and the side effects of medication. I was young and bullet proof and thought that would never happen to me! A Rare Complication By the time I was 25 years old I was having terrible cramping with my periods each month. Sometimes, I couldn't get out of bed. I remember missing a presentation I was supposed to make for a work conference and how unimpressed the (male) managers looked when I finally scraped myself out of bed and got to the conference room. There was absolutely no understanding. Years passed... some months I was ok, others the period pain was excruciating and debilitating. I married and had a miscarriage when I was 30. After the miscarriage I had a constant 'weird' pain like sensation in my cervix. I went to five different doctors including several gynaecologists across the space of that year. One told me I couldn't have felt any pain there because there weren't many pain nerves there. Another suggested perhaps I was having "too much sex". When I asked this gynaecologist could I have endometriosis? he looked me over and said "no" (it appeared he thought he had X-ray vision).Another doctor (female) said to stop worrying, cause even if I did "50% of women with endo can still have babies"..seems she didn't care about my pain. Needless to say I did not return. Eventually, doctor #5 actually listened and ordered tests from least invasive to most invasive (laparoscopy)in order to identify the problem. The least invasive tests indicated nothing, but the laparoscopy did show endometriosis(early stages) and it was removed, except for a patch on the bowel which he did not feel he could safely remove. The surgeon suggested I go on Zoladex (inducing menopause) after I come back from a holiday I had planned. He didn't explain what leaving endometriosis on the bowel might do to my health in the long term. While I was on holidays I got pregnant and didn't realize and went onto Zoladex. I felt terrible nausea and so we didn't continue the Zoladex treatment- but shortly after discontinuing discovered I was pregnant!!!.I was shocked, worried(would my baby be ok considering I had taken Zoladex) and delighted. It turns out the Zoladex did not harm my baby. She is now a beautiful 10 year old and I was also lucky to have a second child (son) who is now 8.After the birth of my second child 8 years ago, my endo pain returned with a vengeance. At the time, I didn't realise all my medical problems were caused by the endo. I would have terrible pain when using my bowels, like someone was pulling my insides out whenever I had my period. Across the last 7 years I bled cyclically every month with my period from my bowel, plus experienced terrible bowel pain, tearing pain in my lower left pelvis when I walk, diarrhoea with period (and now 3-5 bowel movements per day), bladder problems including pain in my urethra (like something sharp is stuck there), urinary urgency and frequency - as if I have cystitis but urine analysis shows no bacteria in the urine, extreme debilitating fatigue, fogginess and anxiety(when I have these flares of bladder problems- usually every month or two and lasting 2-3 weeks), pain radiating into my legs, lower back pain, and the loss of three more pregnancies with my husband. I have had a cystoscopy to check out the bladder problems, but nothing showed up. I had a colonoscopy some years ago, but nothing showed up. My GP ( not my original one from 10 years ago as I moved cities) and I have hypothesised perhaps this is endo related but I didn't want to go on Zoladex again as we have been trying for a baby. Over the last 4 years, the symptoms had all been worsening, becoming more frequent, more debilitating and no solid answers. I wondered if the problem was in my head and should I see a shrink? This year I happened upon a new gynaecologist who was helping investigate my pregnancy losses. The good news was there were no genetic issues. However when I told her the long story about my symptoms and mysterious health problems- she definitively stated "that's endometriosis...it sounds like you may have it on the bladder and that it is (still) on the bowel". I didn't know for sure whether anyone got endo on the bladder. She told me that it was possible and also treatable surgically. She ordered a barium enema to have a look at the bowel, but it showed nothing. Nevertheless, she referred me on to a surgeon who specialises in bowel endometriosis surgery (in conjunction with a bowel surgeon).He had me undertake another colonoscopy with his preferred bowel surgeon (who specialises in endo) and sure enough- he found endo in my bowel wall. He tells me it is a rare complication of the disease, not seen very often. I immediately went out and bought a lottery ticket!! perhaps I will chance a win there? I am scheduled for surgery in July 2010. My three surgeons are planning a level IV excision of endometriosis off the bladder (and anywhere else they find it)plus a bowel resection. The head surgeon is optimistic about my outcomes. Endo has stealthily stolen my health, energy, fertility, and capacity to workfull-time across the span of the last 15 years. I simply haven't had the energy to cope with a full life and have had to scale back. I am hopeful of making a full recovery from my surgery and to experience good health and more energy again. I have been sick for so many years, I am not sure how that will feel- but I sure do look forward to finding out. To all those out there on your endo journey, don't let this @#$% of a disease get the better of you, stay determined to beat it, or at least give it a bloody good fight! Listen to your bodies and be persistent in seeking your answers- many doctors know little or nothing about the rarer complications of this disease (such as bladder and bowel endo)so you do need to persist until you find a doctor in the know. Warm regards and best wishes for your health and life journeys.


Name: kavita singh
Email: kavita0509@yahoo.com
Location: India
Date: June 2010

hi friends, iam 28 yrs old and happily married. few days back only i went through laparoscopy & hystroscopy. my doctor diagnosed chocolate cyst(5.2 cm) endo-4th stage(severe endo)and told me i am having endo from last 10-12 years. i usually had severe painful periods throughout my life. dont know what i am gonna face now as me and my hubby are planning for kid. but after finding this its seams that its not gonna be easy. doctor gave me zoladex injection and told me that my both ovaries and fallopian tubes are fine. we can plan for baby after 2 months (august 2010). but after reading all these stories dont know what i am going to face...hope god answers my prayer.. thanks kavita


Name: Leonie Pietersen
Email: leonie.s.pietersen@gmail.com
Location: South Africa
Date: June 2010

Hi everyone, im a 23 yr old young women with endo, my last laparoscopy was in 2008, but lately i have been feeling the same horrible pains in my lower back and during my periods the cramps are again so painful, im so sick of medication and doctors, but seem like i have to go through it all again, i started my menstruation at the of 11 yrs old, had black outs, cramps, lower back pain, was always tired and sleepy, at first doctors didn't know what was wrong, then they told me that my problem is for a physiologist, and then i found a gynaecologist that just by talking to him and explaining my symptoms, he new it was endo and did the final examinations and so it was endo, we did the first operation in 2006 and second in 2008. and now i have to go through it again.


Name: Sushmita
Email: sushmita8@yahoo.com
Location: India
Date: June 2010

Hi All, I was reading through the stories submitted by many who are suffering from the same symptoms as I am... As a teenager I never had painful period, it was always like the normal day. This started when I was 24 yrs old. I was first diagnosed with endometriosis in 2002, when my doctor said she suspects it then she took a one year long period to confirm it when i had decided to change my doctor who again took a long one year period to check if I could get pregnant but there was no luck. Finally i went in for my first lapro in 2004 which turned into a laparotomy. I had to go in for a second-look lapro after a month. I was desperate to have kids, so went in for an IVF which worsened my condition with new infections, hydro-salpins. Before going for second cycle of IVF i had to go in for another lapro for salpingectomy( now i am left with no tubes) everything went on fine but it failed. The third time both my husband and me thought this will be the last time we go in for the IVF, but this time my hormones are screwed and had go in for high dosages of hormones to let me ovulate, which didn’t help much so had to finish the process with the donor egg. This time we were hoping the result would be positive but no luck. Now we have given up and are going for adoption, but the symptoms of my endo have come back(they disappeared after the first lapro). Its just devastating. I have read that a good diet would reduce the symptoms and pain. If anyone had a good result please advice.




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