All my life I’ve had horrible pain whenever “my time of the month” came and we never knew why. In August of 1999, the pain was so bad my boyfriend physically rushed me to the emergency room.

The nurse on duty mentioned that since there were no visible problems, I might have a disease called endometriosis. For those of you who don’t already know, endometriosis occurs when the lining of the womb develops outside of it and attaches to ligaments and other organs. It can cause pain, bleeding, inflammation and infertility.

For the next year after my first oif what was many visits to the E.R., I devoted most of my time too finding out as much as possible on “endo”. After readings story after story, I was inspired to keep an endo diary, and even though it doesn’t relieve any of the physical pain, it tends to unload some of the emotional pain.

Here is an excerpt: 06.29.01 – “Everyday it’s the same damn thing,: I wake up in pain. I lay here in pain. I cry because if the pain. I am scared everyday. How do I know that the pain I have today, isn’t going to be the straw that breaks the camels back. The one that seals my faith. The one that pervents me of having childern… ”

Here is my personal story.

I had been going to a trusted family gynecologist for years, who assured me my pain was normal, and that there was no way I had endometriosis. He said I had a small cyst (the same one I’ve had since I’m 15 years old) and that was the cause of the additional pain; and that I wasn’t displaying any symptoms of endo. But I knew in my heart that this pain was here prior to the cyst, so either I did indeed have this disease, or there was another valid reason for the amount of pain I’ve been going through since my first period at 9 years old. Throughout grammar school and high school, I would constantly miss 5-6 days a month do to pain. But my parents always thought it was normal and that I had a low threshold for pain. I missed three years of college because I was physically unable to attend. I was unable to do anything. I rarely left my apartment except for doctor appointments and to occasionally see my family. I’ve lost numerous friends because of this disease and it’s definitely put a strain on my relationship with my boyfriend. He’s been taking care of me, everyday now for over 3 years. He puts up with everything this disease puts me through, from the mood swings to the crying attacks. I’ve called him on numerous occasions in the middle of the night because I am in such horrible pain I need someone to talk to. He has been incredible.

Even though this is a physical painful disease without a cure, the hardest part to deal with was the emotional aspects. I sometimes feel helpless and a burden on my boyfriend. It was very easy to fall into a depressive state, where nothing brought me joy. The smallest gesture on his part to bring a smile to my face, had an adverse effect and made me cry. I became an incredibly good actress around my family, because I didn’t want them to worry. I increasing felt guilty for not visiting as often as I should have or consistently canceling on them, especially on my little brother.

I was a very active person. I loved just being outside. I loved going for long walks and swimming. I especially loved going out with my friends dancing, but I can’t do any of the things I love anymore.

It wasn’t until June 19th of 2001, that I was able to take my first real step to relieving my pain. I had my first laparoscopy done with one of the best gynecologists in Brooklyn, NY. From my first visit with him, a month earlier he suggested that endometriosis was the cause of my pain. I experienced 5 out of the 7 most common symptoms for this disease. The laparoscopy was my first operation so I was understandably nervous, but I had my boyfriend, mom, grandmother and little brother there with me. When my doctor spoke with us after the procedure, he confirmed what I already knew… I have endometriosis and that he was going to put me on Depo Provera. I was 21 years old at the time and I was/am most concerned with how this disease is going to effect my ability to have children. He was going to put me on Lupron Depot but said there is a high chance I won’t be able to have children in the future, plus there are numerous side effects of this drug that I was not willing to face. I read too many horrible stories about this drug, that I didn’t want to chance it. Therefore, I went with the Depo.

It’s been a year since I started my Depo treatments and it had helped a lot in the beginning. Even though it had a few side effects (consistant bleeding for about 6 months; significant weight gain; slight loss of hair; and more breakouts on my face), I was able to do more without being in pain. One week in Feb. 2002, was the first time that I went food shopping and didn’t have to stop at every aisle because it hurt too much to walk, and I didn’t have to lean in the shopping cart for fear I might fall. It was a very freeing moment. However, over the last 3-4 months the pain has gotten unbearable again. It hurts to walk, stand for too long and I can barely stand. I am consistently taking Aleve to try to relieve the pain, but it’s not working. I am 22 years old now, and I’ve only been able to complete one semester of college. I actually enjoy going to college, so the fact that’s it’s one more thing I can’t do, hurts alot. I am in the process of seeking additional medical opinions on the possibility of have a laparotomy done.

Everyday is a surprise…”Will I be able to walk 5 ft. without crying or will I have to spend another day trying to stay perfectly still for fear that my next movement will be the one that sends me to the hospital?” I was asked by someone recently, what good does it do to tell everyone about my illness and my answer was quite simple. “It helps others who feel they are going through this torture alone to know there is at least one other person going through the same thing. When everyone around you is telling you to walk it off and that you just need to fix it… it helps to hear it’s ok to be in pain and not to feel weak or less of a person. And maybe if more people make a stir about this disease, a cure will be found.” One close family friend, said it was more information about me than they needed to know, and she is wrong. It’s the information you need to know, because it lets you into the separate world endo puts us in.

We aren’t broken… we aren’t weak… we aren’t lazy… we have a disease.

Thank You for reading my personal story.

It’s now August 13th, 2002, almost a full year has passed since my laser laproscopy that I had with ob/gyn #3. The morning after the surgery, I wanted to clean my room but Michael wouldn’t let me know. That’s how good I felt. I had no endo pain – just surgery pain.

I started my 5th semester at college in September and it was so nice to actually sit and be able to focus. Of course, I over did it like usual and ended up taking a full 3 months to recover from the operation. I guess driving just over an hour to and from college every day, walking around with a heavy backpack, running up and down stairs and working in the bookstore was just too much two weeks after my surgery. The first period after my lap came as quite a shock to me. It hurt so much that I was completely shocked by the amount of pain I was now in. Once the period was over, so was the pain. My periods continued on this way, being very painful for a few months. I of course no longer had the pain 24/7 and was actually sleeping, but as soon as my period came, I was hunched over.

During exam time in December, I had a really bad bout with pain. It was so bad that I even broke down crying in front of everyone. I don’t think anyone really knew just how much pain I could be in until that day. I was writing my accounting exam in the LRC, as I did not get along with the professor – he believed that women had no place in the business world. I wrote my exam hunched over my hot water bottle crying. Needless to say I somehow managed to pull my mark up above 60%.

Around the end of January, I started to have some pain on the left side. I kept brushing it aside saying it was just endo pain, nothing I couldn’t cope with. Even though inside I was really scared that it really was the endo coming back. At the insistence of my boyfriend, I finally caved in and went and saw my family doctor. It was not endo – it was a very severe kidney infection. She gave me some tablets called Macrobid and sent me on my way. Since having those tablets, my periods have been pretty much pain free. I get mild cramps for the first day, which I can get rid of by taking Extra Strength Tylenol. Other than that, I have no pain. Now this points out that I probably wasn’t just experiencing endo pain with my periods, but also pain from a kidney infection. This doesn’t really surprise me at all since I did have endo on the ureter and I had kidney problems when I was younger.

I have discovered in the past couple of months just how much stress can effect a person’s body. I have found that my periods are worse when I am under a lot of stress and the pain increases.

The doctor who did my laser lap a year ago, is my saviour. He gave me my life back. I was no longer in a dazed state of painkillers and I was no longer crying all night from the pain. I could hold my head up and actually focus on what I was doing. I could sleep at night in a comfortable position as opposed to getting a couple hours sleep curled up in a ball. I am very thankful that I found this doctor when I did.

I wanted to update my story on the pulmonary endo. I keep logging on to chat, but I miss everyone.

I am currently looking for a specialist for the lung endo. I have a doctor in PA that I have spoken with. He sounds confident that he could treat me. On one condition; I quite smoking. Keep in mind, I have never met this doctor before and we were on the phone. He was very specific about NOT treating a patient who smokes. Okay……..I know a lot of you are saying “I should quit”. You are absolutely right. But, on the other hand, have you ever been told by a physician he could not treat you because of your drinking habits? I found this amusing. I believe that is against the law. But, what do I know. lol

I am still researching this doctor. I have found some problems. He wants $$$ up-front. He doesn’t care if you have insurance. He still wants the money up-front. I read a posting on another website about him and it wasn’t very comforting.

Well, that is about it. I hope everyone is well.

Take care.
Debbie

It was about 4 years ago and me and my then boyfriend (now husband) were play fighting when all of a sudden I started to cough up blood, We thought nothing of it at the time but exactly 4 weeks later the same thing happened again, when I went to see my GP he told me that I was too young to have anything serious and to go home and stop being so silly.

Every month the same thing happened I coughed up blood, and every time I did I went to A&E they treated me for blood clots which meant a week in hospital and that didn’t stop it they then got so fed up with me turning up in A&E they started treating me in the waiting room in front of the usually Saturday night drunks and druggies.
I eventually managed to get an appointment with a chest specialist after 8 months of coughing up blood and as soon as I sat down his first question was did I cough up blood during my periods, until that point it hadn’t registered in my head that to two ends were connected in any way.

It then took several months and several different scans from radiation to Iodine to try and track this endo, unfortunately it could only be done on the first day of my period and the NHS the way it is you cannot ring up on the day to arrange a scan, so it was all down to guess work and we never managed to get it on the exact day, so I was referred to a gynaecologist who did a laparoscopy and followed up with Danazol.

I had a massive allergic reaction to Danazol and was put onto Zoladex. I only managed 4 months on the Zoladex as it made me ill and what I didn’t realise until I spoke to my brother (who makes Zoladex) I was being given the male version of Zoladex without any hormone treatment to prevent osteoporosis. After a few months respite from treatment I realised I was still in excruciating pain and went back to the gynaecologist to be told that as far as he was concerned I had received treatment and was cured if I was still in pain I should have a baby !!

I went back to my GP to ask for a referral as I was not happy with his attitude or diagnosis, this is when she broke the news to me that the gynaecologist had left the endo on my left tube as it was too difficult to remove.

This is when I was referred to Miss Rose who is a specialist in Endometriosis, and within months she had me in for a laparoscopy and removed everything she could see with a laser and then put me on a continuous course of the pill, unfortunately this did not agree with me and about 12 months ago I was put onto Provera, which I have to say is a miracle drug in as much it has been the first time in years that I have lived without constant pain, unfortunately the downside is I have piled on the weight gaining 3 stone, and it would appear that the pain is returning. I am due to go and see Miss Rose next month but I am not holding out much hope.

As far as surgery goes for endo on the lung, I think they try to treat the cause rather than the effect so they eliminate the endo in other areas first and then I think if I had continued to have chest pain and coughing up of blood then they would have had to re think about the lungs, unfortunately the endo in the lungs only appears on scans on the first day of your period so unless you are as regular as clockwork it is hard to locate.

I have to say though that my husband has been a God send he’s been there throughout and has stood by me when a lesser person would have walked away, and in answer to your question of information unfortunately this seems so rare that I have not found any information or anyone else in my situation.

An Update on Dorna: October 2001

I have since returned to Miss Rose and am now back on the Zoladex but this time I am taking the three monthly injections and HRT (unlike last time when I was not given HRT !!) so the side affects are a lot less very few hot flushes etc. And hopefully next year after my February injection Clive and I are hoping to start a family I will keep in touch as to what happens and will have some good news by the end of next year.

Dorna

I was diagnosed with endometriosis in 1991. I had suffered many years before I had my surgury. I then had three children immediately after the laparoscopy. Since then, I have had pain only the first two days of my menses. A heating pad and Advil would help get me through.

Around 5 months ago, I started to cough up blood. I was really scared. I smoke and assumed that something was terribly wrong with me. I went to see my MD and he told me to see a pulmonologist. (please don’t mind the spelling). I started to notice that I would only cough up the blood during the menses. I mentioned it to the doctor and he said that it is rare and he felt it must be something else. After a CT and two broncscopy’s, he has determined that I have Catamenia Hemoptysis (which means….endometriosis bleeding in the pulmonary area). He was unable to find anything wrong with my lungs.

Over the next month, I am going to have another CT (with contrast) and he wants me to get samples of my blood that is coming from the lungs. He will have these tested for endometriosis tissue.

He also would like me to go to a hospital in PA. University of PA Hospital. I have spoken with two other GYN’s and the all say the same thing. I must go to a learning Hospital. They would be able to help complete the diagnosis and find a solution.

Based on what I have been able to find; meds or a hysterectomy are the only choices.

If anyone out there is going through this or knows anyone else who is, please email me DNegri@aol.com or leave me a messege on this site. Thank you.

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.

For a week or so prior to my surgery I had been suffering severe pain in my stomach area and had gas.

August 20th – Left home around 7:30am to get to my 10:30am appointment with the anaesthesiologist. I got there and had to wait in a waiting room for quite some time before a nurse came and took me to a room where she asked me lots of questions weighed me and took my blood. She informed me that I was to be on a strict clear liquid only diet for the bowel prep. Saw the anaesthesiologist and he asked me a few questions about my health and what not.

Saw Dr. Lie in the afternoon, I managed to move my appointment up from1:45pm to 12:45pm. He was quite friendly and in a much better mood. Michael was with me and asked him a few questions. I got the information on the bowel prep so from Monday noon until Friday evening I had nothing but clear liquids.

August 22nd – Left home at 5am to be at the hospital for 8am. Was really nervous and didn’t want to have the surgery. Michael stayed with me right up until they took me in. Met a different anaesthesiologist and his assistant and they took me into the operating room. Dr. Lie told my parents and Michael that he removed a lot more endo than he was expecting and that is why I was under for so long. He said that he removed everything that he saw and that if I followed my diet and exercised I’d be fine for quite a few years. I took a long time to wake up from the anaesthetic and didn’t wake up until about 3pm. The nurse tried to get me up to go pee but when I sat up I felt nauseous so they gave me another bag of gravol in my IV. Finally woke up from that around 5pm and spent from 5pm to after 8pm trying to go pee. Finally the nurses had to put a catheter in which I didn’t want but had done. They put it in and pulled it right out. Nothing happened while they had it in so they concluded I was very dehydrated and that I was to stay at the hospital all night. I told the nurses that I had to pee and the nice one told me that it’s just because my bladder and such had been irritated but she let me sit on the toilet anyway. I managed to go pee so they finally let me go home.

I wasn’t feeling too bad that night, just suffering a lot from the gas from the surgery.
About 12 hours after we got home and I had a little bit of sleep, I was out of bed and moving around and doing stuff (I shouldn’t have been but I was bored of staying in bed). On the Friday I tried to vacuum my sister’s bedroom but Michael wouldn’t let me.

Since the surgery I have never felt better. I have no pain, except from the incisions and the surgery itself and I have actually slept all night long. I am hoping that things stay how they are so that I can enjoy a normal life for at least a year or two.