Endometriosis Stories - Page 32

United States

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 diarrhoea. I did it for about 4 months and finally went back to the doctor as the pain continued. I did several tests. 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 crohns disease.

I had a colonoscopy. I was 14 at the time! We didn’t find anything from that but still thought crohns 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. I had awful diarrhoea. I was rolling on the floor because the agony I felt 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.

But then I started having pains in January. I had an ultrasound done again with it not showing anything bad. I went to see a gynaecologist 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 endometriosis 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 

United States

I started my cycle when I was 16 and my severe cramping began that very first time. I have had so far 3 surgery 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 get the worse the pain and symptoms become. 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 realise is that I have 2 weeks of symptoms, which include severe cramping and my stomach swells 3 times it's size.

The swelling is so embarrassing 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. I've been on every 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 Endometriosis is. I have 5 sisters and 3 of them have had Hysterectomies. 3 weeks ago when I 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 any time 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. 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. 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 sono-hysterogram within the next week.

My last ultra sound showed I have Fibroids and polyps as well as the Endometriosis. 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 

Elle US

I was diagnosis with Endometriosis in 2008 when I was 18. Prior to my diagnosis ('07) I had chronic pelvic discomfort, 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 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 endometriosis because I didn't have chronic bleeding and it has to be associated with your period to be endometriosis.

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 Endometriosis 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 endometriosis in which they told her she'll never have children (Doctors don't know it all, I believe in miracles). Fast forwarding to the present, my current doctor 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 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 just want to be normal again. I'm not going to worry or panic about getting pregnant or if I can become pregnant. I've heard that having a baby could help with the endometriosis, I'll 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. 

Sylvie Yourt

I was diagnosed with endometriosis at 16 and I am now 32. I've been struggling on and off with excruciating symptoms 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 a lot 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. 

Sally O'Carroll

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.

Another doctor (female) said to stop worrying, cause even if I did "50% of women with endometriosis 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 endometriosis pain returned with a vengeance. At the time, I didn't realise all my medical problems were caused by the endometriosis. 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 endometriosis 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 endometriosis 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 endometriosis) and sure enough- he found endometriosis 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.

Endometriosis has stealthily stolen my health, energy, fertility, and capacity to work full-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 endometriosis 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 endometriosis)so you do need to persistent until you find a doctor in the know. Warm regards and best wishes for your health and life journeys. 

Stories - Page 33