When I was 14 and had started my periods I had projectile vomiting and had to have at least 2 days off school each month. My mum then took me to the doctors and I was put on the contraceptive pill and I was still 14.

10 years later my GP thought it would be a good idea for me to come off the pill just to clear my system out because I was put on it at such an early age. Within 2 months I was admitted to hospital with severe abdominal pain. They decided to do a lap, I had now had 3 months off work, I had my lap and was diagnosed with endo. I was then put on the contraceptive pill. From the time I was in hospital to when I was diagnosed was 4 months, work were not very good about the time I had off and by november which was 2 months after I was diagnosed but the pill was not working. I had to go to a tribunal and my employment was stopped and this was with a goverment run company and I had been with them 8 years, I had no energy to fight so I let it go.

The consultant kept changing my pill but nothing worked so they decided to put me on zoladex for 6 months, the first 2 months were so painful but after that it seemed to ease I was on the floor in pain as much which was good.

But I still had a pain on my right ovary, but my consultant kept saying it was in my head because the zoladex have stopped my periods.

I kept going back and after the zoladex I was put on depo-provera, the contraceptive injection, that was in August 2000.

The consultant said that all the pain I was getting was in my head and in January 2001 I was discharged, they said they could do no more for me.

April that year I was rushed into hospital and I had my appendix removed but there was nothing wrong with it, so I had the pain I went in with and the appendix pain I went in with to cope with.

They decided I should see the gynae again and I was put on a list for a laparoscopy.

I went in for day surgery and had my pre-med and they decided that they were not going to operate because they wanted to laser the endo out if there was any and that day they didnt have the equipment.

So i went back 6 weeks later and was at my pre-assessment and I said exactly the same and they decided not to do it again but refer me to a bowel specialist again, because it could be irritable bowel.

I then moved away from the area, and had to start all over again. I moved October 2001 and by June 2002 I had seen the consultant 4 times and had diathermy. I went through a rough time getting well but even though I went through all this I had found a consultant that listened and that was great because even though it was hard work I felt better because I had found a consultant on my side, I go back on the 19th August and decide which way to go from there.

What I’ve learn’t from this is that there are good consultants out there and they do make all the difference, and yes I still get pain but inside my head I feel a lot better, because someone is finally listening and believing

Hello,

My pain started last April 2001.

I woke up one morning with severe pain on my side unable to get up from bed. Pain sooo severe that i grind my teeth just able to get to the phone to call work that i won’t be in. After an hour or two massaging my side i was able to get aspirin and pain relievers. Only that it helped for awhile. after three days in pain i got my paycheck and was able to go to my doctor where infact i pay in cash. (making this story short) (click for more)

My doctor prescribed muscle relaxers and upped my anti-depressants. a week later i went back. pain still persisted. I cried in pain and showed her(doctor) exactly where my pain is. she looked at me asked a couple questions and shook her head and said “I don’t know what it is”. from there i knew she couldn’t help me anymore and went to OBGYN.

There, i was tested, with blood tests, pap smears, abdomen ultrasounds and pelvic. only to find out that i had a fatty liver. (din’t help relieve the pain) She got me on meds (darvocet, tylenol 3, Vicodin). Only one that did help is vicodin.

(my pain is located on my right lower pelvic side. Pain running down my right leg, like needles or lightning running up and down. And lower back pain and some groin pain too.)

Now of months of pain and missing work part of the time i got fed up with taking many pills. So i stopped. Also becuase i couldn’t afford it anymore (no insurance). I was seeing a chiropractor for treatment but even that got expensive. Then on November 2001, i lost my job. no income, no meds, but still pain on my side that no one could tell me what it is.

Going back too my obgyn in January 2002, she recommended lapcrospy (?), neurologist, cat scan, other test done but with no funds coming in i couldn’t afford it. She recommended it could posibly be endometriosis. but with out the test she can not make a diagnosis.

After seeing another OBGYN, once on trial dissability, i was able to afford meds and asked to up the dosage to Vicodin es. After the exam he suggested laprocrospy(?) that it can be Endometriosis. But test should be done. I’d asked him what can i expect? What are my options?
1=basicly more pain that can be treated with medication.
2=Surgery, but no garuntee that the pain will go away.
3=Wait til menopause.

But a good chance of being infertile…..being 29 years old and no children. I would at least like to have a child. (he then recommends no surgery).

It’s July 15, i only have 2 pills left, saving them for when i do need it. With no job, no money, barely paying my bills with one day jobs.

I am tired of this pain that starting to get to me again. I feel like chopping off my right leg and bangin it to floor in order to feel another kind of pain.

It’s frustrating when your family thinks that i am being lazy or faking it.

It’s frustrating when i am with my friends and i can’t sit for long time or can’t run and play or when i get moody. Sure they understand but i don’t know as to…. why me?

As i sit here in pain only thinking of lying down which helps sometimes. Only thinking that tomorrow is another day of pain and how would i handle that. Dreading it.

Thank you for reading my story. As it will continue…..

until then good night!
Adriana

It was 3 years ago now when i started finding it hard to take a deep breath and swallow. I put it down to the fact i had a bad cough and that i also smoke.

It was a few months later when i first coughed up blood which scared the hell out of me. I then realised that there was definitely something wrong and it wasn’t all down to a cough. I went to see my doctor who told me i had a chest infection and prescribed me antibiotics. he also sent me for a chest x-ray just to be sure. Results of my x-ray came back as clear and so i presumed it was just the chest infection. A month later from the 1st episode i coughed up blood yet again and went back to the doctors who sent my phelgm away to be tested. I still hadn’t realised that this was happening only when i had my period. My phelgm came back clear and by this time i had coughed up blood once more. The doctor then wanted to send the blood i was coughing up away and so i did this waiting a month at a time. this time the results came back with an infection and i was prescribed the correct antibiotics. Yet again the same thing happened, i coughed up blood and this time i noticed i was on my period and that it seemed roughly 4 weeks between each episode. I went back to my doctors again and i explained about it co-inciding with my period and he mentioned to me endometriosis although he stated this was extremely rare. He wanted me to go away and keep a diary for 3 months which i did and sure enough on the 1st day of my period i would cough up blood. My doctor referred me to a chest specialist who carried out a CT scan which showed up nothing. He then performed a broncoscopy which is a camera down my throat into my lungs to see any abnormalities and they found a patch of endo on the tubes from my throat to my lungs. I then had to be referred to a gynaecologist for my treatment. Ihabe now finished my treatment of hormone therapy and i feel worse now than when i was coughing up blood. My throat feels constantly raw and i still find it difficult to breathe deeply and swallow. I seem to pick up colds and coughs really easily and i feel physically run-down. My whole body aches, even brushing my teeth is an effort and i’ve been back to my doctors who are saying i have stress??????? I don’t have a lot of pain occassionally i get cramps in my chest but they are more irritating than painful. The chest specialist did mention to me the possibility of cutting part of my lung away or freezing the affected area but i havent heard from him since.

I hope this helps sorry its so long-winded. There is very little info out there on endometriosis in other parts of the body and i never knew if my symptoms were due to endo or something else. I’m relieved to find that its not all in my head and that the symptoms are real.
By Danielle Parker

My Endo Story

by: Misty Fout

In the Winter of 1994, I gave birth to my youngest daughter by c-section. I had so many female problems with her. My blood pressure shot up sky high and was rushed into intensive care which including becoming toxic. When she was delivered after 26 hours the doctor and anesthesiologists came to my bedside and told me that something was wrong. They wanted to admit me to the Hospital. I was not in the state of mind to answer and my husband at the time said “no”. Well, needless to say I came home and was still suffering problems from delivery. I had to be put on blood pressure medications.

A few years past in the summer of 1997 I became very ill after I delivered my second child (she was also by c-section and including tubes tide). He also, cut the nerves to the ovary to try to stop the pain, but it was still there. I laid in bed three weeks out of a month with pain shooting in the abdominal area. I called my obgyn and he took me in to his room, but to only diagnose me with Gas. After a couple years passed I became more demanding of my obgyn to go in and take a look. Even though his mid-wife all along kept telling him that I had endometriosis. So, In 2000 I got my first lap done. He found nothing and I just started crying because I felt hopeless of finding out where the pain was coming from. I did a little bit of researching on the net about this disease his mid-wife was telling me about. The symptoms were almost the exact thing I was feeling. So, I took my pictures and compared them with others on the net. Unexplained red rash was on it and apart of the ovary was uncovered (didn’t have the white coating on it). I then found me another doctor the beginning of 2001. It didn’t take but one week to get into surgery, and come to find out I had Endometriosis in stage I with the paracolonic gutter ablivated with adhesions. Including was a chocolate cysts that had been leaking (same ovary that was uncovered). By this time the cyst was so large that it was bigger then the ovary itself. However, it was not removed during surgery. I was put on a medication to decrease the size. The pain and torture my first obgyn let me go through was a nightmare. My current obgyn said “You need a hysterectomy”. I told him “No!”. Which only being 25 years old I feel its way to soon yet. He put me on Synarel and it did work but, I suffered severe sore joints. He never tested me for bone loss. He then put me on Danocine. He never did any type of liver check either. There supposed to check your liver and your possible bone loss while on the medication. While I was on it, it was a total nightmare because my blood pressure shot up for the first time in a couple years. I felt sick all the time. I decided to just go off of it and I have never felt better being off the medications, but still have my pain and symptoms but, I don’t hurt after I have my period for a week.

I have been suffering from pain in the lower back, back sides, hips, leg shooting to knee, joints sore, abdominal swelling, painful bowel movements and frequent urination and uncontrollable leakage. I have also lost the feeling in my left leg and this only starts when I start ovulating to the end of period. I am currently seeing a neurologist to see what this is from. One of my doctors seems to think that its due from the adhesions effecting the nerve endings. I have been experiencing mild headaches that lasts for a couple days (never had this experience) and I have had the same cold for 6 months. The cold seems to get better with medication but when I get off of them it comes back. I was told by the EA that it could possibly be Autoimmune dysfunction. This is only the beginning of fighting back. I know this disease can be very depressing. I have a history of depression.

There is nothing like to know something like this is in your body and your body tells you everyday “there is a battle”. I’ve walked your road and I know how you feel.