Dorna’s Story – Coping with Lung Endometriosis

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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.

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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

What is Endometriosis?

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Endometriosis is when the endometrium, tissue that lines the inside of the uterus, is found outside of the uterus in other ares of the body, except the spleen. The growths respond to normal hormonal surges, to grow or shed, but the blood generated has nowhere to go, so causes pain, inflamtion, and adhesions.

Endometriosis tissue also generates small amounts of hormones themselves thereby meaning they continue to grow very slowly fuelling themselves – even after treatment for hormones etc..

Pulmonary Endometriosis Contributed by debi9topaz

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.

My story Contributed by Pingu

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

Chapter one: The beginning Contributed by AdrianaM

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

Conclusions that may be drawn from the Endosupp 2002 Questionnaire results

The majority of women who suffer from Endometriosis and are diagnosed with it or seek online information or support for Endometriosis are between 20 years old and 39 years old.
It should be noted that this age-range is affected by the age of

the majority of Internet users – studies show that men and women above the age of 35 tend not to utilise the Internet as extensively as those ages before 35 (this figure is improving all the time).

The majority of respondents were from the UK, this is due to many factors, the questionnaire was publicised both in the UK and in the USA on official message boards and mailing lists, however the UK community tend to have a more focused approach with many sites available for messaging, live chats etc. This led to a faster and more widespread response from the UK than from any other country. We are seeking ways of publicising the next questionnaire further.

The majority of women have been diagnosed for 1 to 5 years, this may be because women who have been diagnosed for less than a year are still learning about Endometriosis and have not yet found online resources to help them and so they haven’t learnt about the questionnaire. The drop in numbers for people diagnosed above 6 years may be because these people fall into the over 35 range and may not use the internet.

On the subject of other medical condition people suffer from several conditions stand out as having a good possibility of being closely linked to Endometriosis. Ovarian Cysts formed a massive 39 percent of other conditions that exists with Endometriosis; this may indicate that any woman who has been diagnosed with Ovarian Cysts may have Endometriosis, especially if the woman suffers from one or more of the other frequent conditions. Migraines feature highly, this is probably due to the pain and stress induced in many women by Endometriosis and probably cannot be taken as a condition linked to Endometriosis as in today’s lifestyle so many aspects can trigger off migraines. On the other hand IBS and Depression do seem to be symptoms that many women suffer from with Endometriosis. Many Endometriosis sufferers were initially diagnosed with IBS, this would indicate that Ovarian Cysts, combined with IBS – both of which can lead to depression being diagnosed – are strong indications that Endometriosis may be involved.

The symptoms that women have with Endometriosis was by far the largest ranged, but some results stand out. These symptoms could(or should) be taken as indications that a women may have Endometriosis and that potentially more diagnosis should be undertaken to ascertain if this is the case.

Fatigue is the biggest symptom; unfortunately it can be brought on my many aspects of modern life and on its own cannot be taken as a good indication. However what is apparent is that the community could benefit in help in dealing with fatigue.
Back Pain is present in a surprising number of women with endometriosis, this is another area that more information needs to be made available to Endometriosis sufferers in order to help people cope with it.
Headaches are present in many women, this is probably due to the indirect effects of Endometriosis. Fatigue and Back Pain coupled with Depression are most likely major contributors to this.
Many women suffer from bloating, from the results of the questionnaire this appears to be a good indication of Endometriosis with over 75 percent of responders suffering from it. Along side this Pelvic Pain and Painful Bowel movements along with constipation appear to be linked to Endometriosis.
A strong link is apparent between painful sex and Endometriosis, the figures may be higher than reported due to the personal nature of the question.

For more information look at the results page on www.endosupp.com.
If you want more detailed information about the results you can send an email to webmaster@endosupp.com asking for the information you requires, if you can tell us why you want the information we will respond as soon as we can.
N.B. All information divulged would be without any information that could identify the respondents in any way.

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