I just wanted to provide this forum with some valuable information. I have done tremendous research and traveled the country in search of the best resources to cope with endometriosis. I recently underwent surgery with Dr. John Rock, former president of the World Endometriosis Society. He is a leading expert and innovator in the research and treatment of endometriosis. He performed a laparotomy on me in October 2002 and the results have already been remarkable.

I am finally pain-free.

I am 23 years old

and I have been suffering from endometriosis since my first menstrual period at age 11. My younger sister was diagnosed with endometriosis at age 13. She and I have been treated by the most prestigious medical facilities and doctors in this country. I have visited the Mayo Clinic in Rochester, Minnesota, the University of Michigan Hospital in Ann Arbor, Michigan, Dr. Marc Laufer at Boston Children’s Hospital in Boston, Massachusetts and with doctors such as Dr. Rock at Emory University in Atlanta, Georgia. I have also consulted with Dr. David Redwine in Bend, Oregon and gynecological specialists at the University of Miami Medical Center as well. I have done tremendous research in medical journals and consulted with numerous other physicians nationwide.

It saddens me to hear of the countless surgeries that you all have undergone and the fact that doctors do not know how to properly treat endometriosis. I have been in your shoes.

But now with the expertise of Dr. John Rock and his team of gynecological specialists at Emory University, I am well now and I am off all hormones and prescription drugs for the first time in 12 years.

Since I was 11, I have been plagued with cramps, lower back pain, cystic ovaries, gastrointestinal and urological symptoms due to the endometriosis. There is no cure for endometriosis.

But there is help out there.

Dr. Rock has taught me that often times, as with my case, laparoscopic surgery is not thorough enough in exploring and treating endometriosis. Often times, the endometriosis is deep within the pelvic cavity, it is in the retro-peritoneum and deep in the utero-sacral ligaments. The laparoscope is often unable to see all of this deep endometriosis. That is why a laparotomy is often necessary.

I was first diagnosed and treated laparoscopically in 1999 but my symptoms did not improve, even with continuous birth control usage to suppress my periods. I have learned that there is a type of endometriosis that one is born with, like myself and my sister. The pain is present before one’s first menstruation or at the onset of menstruation. This type of endometriosi is congenital-one is born with the disease. This is the deep disease that needs to be removed by laparotomy.

I have also learned that hormones do not always suppress the growth of endometriosis. Often times, hormones are only implemented to suppress the symptoms, not the growth. In addition to excising, not lasering or burning the endometriosis, Dr. Rock and his colleagues at Emory also perform a procedure called a presacral neurectomy to combat the neurological pathways that transmit pelvic pain.

It is important that young girls and women, like yourselves, realize that painful, debilitating periods are not normal. It is very important that you find the right specialists. There are too many myths and misconceptions out there regrading endometriosis. You owe it to yourselves to find the best healthcare providers. I consulted with very reputable specialists in my hometown of Miami, Florida but I was misdiagnosed for nine years and not treated comprehensively enough with laparoscopic surgery.

I urge those of you out there, both young and old, to find the best doctors. Your pain is real. Wonderful endometriosis specialists are out there. They are just often difficult to find.

Endometriosis can only be diagnosed through exploratory surgery such as laparoscopy and laparotomy. It is not necessary to have multiple surgeries and radical surgery such as hysterectomy. My reproductive organs have been spared because I found the best resources and the best doctors. I have tried everything from hormones to acupuncture. These treatments only mask the pain-they do not rid you of the disease.

If you have any questions, please contact me via e-mail at risajb@aol.com and I will help get you in touch with the best endometriosis specialists. I want to help spare you some of the pain my sister and I have endured. It is important that you take an active role in your health-your quality of life and your fertility are at stake.

My name is Mandi Hood. As I sit and write this I am recovering from a hysterectomy on October 2, 2002. I am 32 and was diagnosed with Endometriosis at 21. I have had 12 surgeries in the last 11 years. I almost feel like an expert now. I had Endometriosis, polycystic ovaries, and fibrocystic tumors. I so wanted a child so when the doctors told me to have a hysterectomy at 21 I told them no that my God was bigger than them and they were not removing any of my body parts… thus begins my long journey.

After many fertility treatments, Lupron treatments, and many other treatments, I did eventually lose my left ovary and fallopian tube in January 2000 because of a cyst the size of an orange. Every surgery brought more bad news of scar tissue and Endometriosis. My uterus was always stuck to my endometrial wall as well as my ovaries. I also had Endometriosis on my colon and no doctor dared to touch that. Pain has been my constant companion for all of these years. I was diagnosed with fibromyalgia in August 1999. I had no idea the two were related until now.
In August 2000, after giving up hope I found out I was pregnant. My husband, Edward and I now have a beautiful 18 month old baby girl. She is my miracle. Last month I started my period and it was awful. I was bleeding so heavy and passing large clots(4inches in diameter). I had to wear adult diapers. After two weeks of bleeding like this we did another surgery. By the time I got to the hospital my blood count was down to 9. When they got inside they found horrendous scar tissue. My uterus and colon were completely fused together and once again I had fibroids in my uterus. I started bleeding and lost 900cc more blood. I had to have a transfusion. The first few days after surgery I was in so much pain that I swore that if I died and went to hell that Satan would used a hysterectomy as my eternal punishment. Now 9 days later I look at my little girl and thank God for her and for my life. I needed to share my story to let other with this condition know there is hope.
Copyright © 2002. Mandi Hood. All Rights Reserved.

Here is a mother’s story on how she deals with her daughter having Endometriosis.
Hello,
I’m a 40-something woman who has known a few women who had a condition called Endometriosis. I knew these women had occassional pain and both had difficulty having children. One of my friends was able to conceive, but miscarried several times before having two successful pregnancies. I also knew they took medication to help with the endo and had some side effects. At that time, I never gave endometriosis much additional thought.
That all changed in September 2000 when a surgeon came out to tell my husband and me that our 13 year old daughter had endometriosis. Briefly, here’s how it started:

Our family was vacationing out of the country in June 2000 when my daughter, Angela, began having severe abdominal pain a few days before her period began. Her pain level remained high and it lasted for almost 2 weeks. Until that month, she had experienced little, if any, menstrual cramping. For that reason, I just assumed it was a one time problem and treated her symptoms with Tylenol. However, the next month, she once again began having excruciating pain but that time, it started about a week before her period and continued for a week and half during and after her period. In total, she was in extreme pain for about 2 1/2 weeks in July. I called her pediatrician and he wanted to examine her.
Her pediatrician found nothing during the exam which would cause such intense pain and he told us that the pain was lasting too long to be related to her menses. He said he would consult with a pediatric gynecologist. At that time, I didn’t know that there were gynecologists who specialized in pediatric and adolescent gynecology.
The next day, Angela’s pediatrician called to report on his consultation with the gynecologist. The specialist agreed that ‘something’ was not right and he wanted Angela to have an ultrasound. That was scheduled just a few days later at a local children’s hospital. The ultrasound indicated she had a cyst in her right ovary and in the fallopian tube. With that finding, Angela then became a patient of the pediatric gynecologist.
At our first appointment, he explained there were two kinds of ovarian cysts; one was filled with liguid and usually responded well to hormonal treatments and the other was a dermoid cyst which was a solid mass that would never respond to medication. The only way to get rid of a dermoid cyst would be surgery. We were told that many women and girls had liquid filled ovarian cysts that never caused any pain because they responded to the body’s natural hormonal cycles. In other words, they would fill with blood and then shrink and the blood would be expelled during the monthly menstrual period. However, some girls and women had these liquid filled cysts that did cause pain and a low estrogen birth control pill was prescribed along with an anti-inflammatory drug (such as Anaprox) and this prescription combination controlled the pain. So, being optimistic that she had the liquid filled cyst, she was started on the birth control pill and the Anaprox.
We were cautiously optimistic as we waited to see what the month of August would bring. Unfortunately, it was a total repeat of the prior two months. She was in so much pain she just laid on the couch curled up in a fetal position with a heating pad. Again, this went on for about 2 1/2 weeks.
I was getting very concerned especially because her 8th grade school year would be starting soon and I knew she couldn’t miss over 2 weeks of school a month. So I called the doctor and explained what had happened. Though he was a little less optimistic as before, he did ask that we try to give the medications another month to see if they kicked in and began to ease the pain.
On September 1st, less than two weeks since the pain ended in August, Angela awoke with a lot of pain. I think I knew at that point that surgery was going to be required. School began after Labor Day, and she spent as much time in the nurse’s office as she did in the classroom. After many phone calls and visits to the doctor, we decided to go ahead and have him perform surgery to remove the cyst. The surgery was scheduled for September 29th. During the month of September, she did not have one pain free day.
Her surgery was performed via laparoscopy at our local children’s hospital. Our doctor said it should only take about an hour to remove the cyst and get her back into recovery and that he would be out to speak to us as soon as he finished. When he came out about an hour and a half later, he immediately told us she was ok. We then went into a small conference room to get a full report. He told us he was so glad we went ahead with the surgery because “he found a lot more inside than he was expecting”. Nothing horrible, he said, but in addition to the cysts, he discovered endometriosis in her right ovary and he found she was retaining a lot of blood in the uterine cavity that shouldn’t be there.
He then told us that any one of those three conditions (cyst, endo, and excess blood) could cause intense pain and considering the fact that she had all three, he was amazed that she was functioning as well as she had been. Because of finding endo in the right ovary, he also went into the left one to see if there was any sign of endo there. Fortunately, he did not see any but he did biopsy it to make sure. The pathology reports indicated microscopic endo was still present in the right ovary but the left one was clear.
A few days following her surgery, I began my quest to learn as much about endometriosis as I could. What I found was a lot of conflicting information. I felt confused and overwhelmed. At our first post-op check-up, her doctor recommended Angela be placed on Lupron for 6-8 months which would temporarily put her body in a pseudo-menopause state to allow her insides time to heal properly. Lupron would stop her periods but she could experience the usual side-effects of menopause such as hot flashes, weight gain, etc. I am not a medical person in any way, but although the explanation of Lupron sounded feasible, many red flags were waving in my mind. These red flags were questioning the physical changes we’d be putting on a 13 year girl who had only been having her menstrual periods for just over a year. I kept thinking this way: She has a period for let’s say 14 or 15 months, now we’re going to stop them for 6 – 8 months, and then we’re going to let her start them again. Somehow I kept telling myself this could not be good for her young body.
I questioned the doctor on the potential side effects Lupron could have on Angela and young teenage girls. The response was that research has shown only that some girls experience a small amount of bone density loss but that calcium supplements could counter that. Being optimistic, I refused to begin the series of Lupron shots until I had done more research.
Unfortunately, my research revealed that not much research has been done on the side effects of Lupron on teenagers. What I did find was that the results of lupon shots in ladies in their 20’s and 30’s were not all that positive. Many did find some pain relief while they were on the shots, but most reported that all or some of the pain returned immediately after they stopped the series of treatments. It seemed to me that quite a few of these women felt the side effects of Lupron were as bad as, if not worse, than the original endo pain they were trying to relieve. Some of these side effects were the hot flashes, weight gain, extreme mood swings, very dry vaginas and painful intercourse. The more I read, the more I decided that I did not want to put my young daughter through all that.
As I continued to research endometriosis on the web, I found two places that I personally place the most trust in. While there are many websites related to endo and I do not pass judgement on their validity or their views, I felt more comfortable with the Endometriosis Association founded by Mary Lou Balweg, an endo survivor, to try to educate and support other patients with endo. This organization provides support, educational materials, books, pamphlets, videos but more importantly, are involved in cutting edge research on endometriosis.
My second saving grace was an online support group called DaughtersWithEndo at Yahoogroups.com. Just reading the name alone gave me great comfort in my early days of reserach because I thought “I’m not alone”. There are other Moms or Dads trying to cope with the knowledge that their precious daughter has an incurrable disease. DaughtersWithEndo is a message board where parents can ask questions, share their personal stories, and lift others up when they are emotionally and phycially drained. What I found on those boards were real parents with real teenagers living with endo. Some of these parents have daughters who are doing amazingly well since their endo diagnosis. Some of them have daughters who seem not to respond to any treatment and whose quality of life is so difficult, it will bring tears to your eyes as you read and share their struggles.
For me, the greatest thing I have gotten through this board is validation for my red-flag decision not to use Lupron. While some of these young girls did find relief from Lupron, the parents have reported the same side effects mentioned above, as well as severe depression and memory loss. In many cases, these young girls became so depressed they were near suicidal. The depression led to additional medications such as Prozac and then it was like a never stopping merry-go-round. Each additional medication would lead to other problems and more medication. That certainly is not what we want for any of our daughters. The memory loss from Lupron has made school a major struggle for many of these girls who were once honor students. After Lupron, they can read assignments yet not be able to remember what they’ve read. What most of these parents have taught me, is that I should consider Lupron only as a last resort and that’s been my decision.
It’s now been almost two years since Angela was diagnosed with endo. Overall, she is doing remarkably well and I consider her to be one of the lucky ones because this disease may slow her down at times but it hasn’t completely changed her life. I credit this to our continual research about endo, our positive outlook in dealing with an incurrable disease, to her doctors, her school and our wonderful support network of friends and family. She remains on birth control pills to control the amount of estrogin in her system and we’ve found ways to help with pain. She will be starting her sophomore year of high school next month where she actively participates in the drama and musical clubs and sports. We don’t know what the future holds for her but we take each day one at a time. As a Mom, I worry somewhat about the future. I wonder if the endo will get worse, will it appear in more places, how will this affect her fertility down the road should she want children. I try not to borrow trouble from tomorrow because we’ve got enough to deal with today. We continue to educate people about endo, especially her teachers at school (with help from the nurses and guidance counselor).
Many people find it strange to hear me say, I’m glad Angela had an ovarian cyst two years ago. I say that because it led us to a definite diagnosis of endo within 3 months of the onset of her pain. Considering that it takes most women 6 to 7 YEARS on average to get an accurate diagnosis, I’m forever grateful to her pediatrician and her gynocologist.
© Bert Thomas

Today, August 22, 2002, I have been pain free for 1 whole year!!!! For me this is a great achievement. I lived for several years prior to having a lap with a specialist in constant pain with nothing that would take it away.

Thanks to my specialist, Dr. Lie, I have spent the past year with my life back. I was able to focus in classes. I didn’t have to take high doses of pain killers just to make it through the day.

To not be in pain for an entire year, except of course for the pain with my period which was mild, is something that I have never really known since starting my period. It is a totally amazing feeling.

I hope that one day, all of the women who suffer from endometriosis, will know what it’s like to be pain free, forever.

Arianna
August 22, 2002

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.