Hi there sistas!

My name is Gemma, I'm from the UK and have been suffering with endo symptoms since I was 15. I'm now 24. I was diagnosed by the laproscopy in the year 2000 and, give or take the occasional bout of pain lasting a couple of weeks, I had mostly been Ok until recently, now it's hit back with a vengeance and I am struggling to cope. I am really finding it hard to accept how much it is robbing me of my life, there are so many things I can't do, so many decisions I can't make, all because of this horrendous pain. It just seems so unfair.

So far I have tried:
Contraceptive pill - all the time
Prostap/Zoladex injections
Back onto Contraceptive pill, all the time.

Everything seems to "work" for about a year, then it just gives in again. I'm up for another laproscopy I reckon, once I finally get to see the doctor (I have to wait til Feb 12 just to SEE the gyno!)

I worry because I'm missing so much work, and so much life. I can't have sex, I can't drink alcohol because when I do it stings to pee, pretty much every time. (But urine tests come up clear).

The depression of the pain really got to me the other day, I was crying my heart out at 4am. I started my antidepressants again, they made me vomit and have diahorrea on top of it all.

Some days it just seems endless, and if this is how life is going to be for the rest of my days, then what's the point? It's no life.

I'm really tempted to just go ahead and have the hysterectomy. I daresay I HAVE to try it. But I have had no children. My partner doesn't especially want children either. So, I don't know what to do. At the end of the day if there's a chance it'll give me my quality of life back, then I can always adopt maybe. I just want the pain to end!

Sorry this has turned into a bit of a rant, it's one of those days. :( But I hope to speak to other fellow suffers on here and pick up some advice & hopefully we can all get through together.

Keep on keepin' on.

Gemz x

:( HUGS Sorry to hear you are having such a rough time right now sadly that is all to common:(

I never used any "treatments" I tried Birth control pills but never did well on any of them. Have they mentioned Lupron? The sad thing is for some of us is it comes back so quick and in others it seems to take years.
I was a quick one as well.
One thing I would like to recommend is to journal your pain, symptoms and things you are taking so when you go to the Doc you have an easy reference and they tend to take you more seriously. Its sad you have to wait so long to see a DOc.
Ask often, post more and know that you are welcome here and nothing is too much information!

Hugs

Welcome! Finding sites like this is somewhat bittersweet.

I just heard that the UK is going to cut government funding for Endo research! Have you heard anything about this?

[quote="Spacecadet702"]I just heard that the UK is going to cut government funding for Endo research! Have you heard anything about this?[/quote]

Really? Oh that is the worst thing I've heard! I doubt our gvt spent anywhere near enough in the first place, never mind cutting it! Mind you I don't know why I'm surprised, our gvt are only in it for themselves, they don't give a flying one about anybody in this country!

Going to see if I can find more about this... :evil:

I will have to look up something that was sent to me from the Endometriosis Association. They made an annoucement just last month that they are teaming up with many countries in Europe. HMMMM I will see If I can find that and post it, I didn't get the impression that England was behind us in research, I thought they were slightly ahead???

Here is the article I was thinking of.

World Endometriosis Research Foundation launches at ASRM




NEW ORLEANS, 22 OCTOBER 2006: The American Society for Reproductive Medicine (ASRM), the European Society for Human Reproduction and Embryology (ESHRE) and the World Endometriosis Society (WES) are proud to announce the first global endometriosis project initiated jointly by these three professional organisations: the establishment of the World Endometriosis Research Foundation.

The World Endometriosis Research Foundation is the first global charitable organisation with an aim to foster research into endometriosis to improve knowledge and treatment(s) of this enigmatic disease.

Endometriosis affects tens of millions of women around the world, yet its origin is poorly understood, most treatments have side effects, and there is no cure. Endometriosis is commonly associated with infertility and pain in women. The symptoms can leave a woman unable to finish an education or maintain a career and have a significant effect on her quality of life as well as a substantial socio-economic impact.

The Foundation will achieve its aim of fostering research by providing a platform to attract sufficient funding from a variety of sources to:

* Facilitate and carry out large scale international multi-centre trials involving sufficient patient numbers to provide results of statistical significance;
* Support specific research projects investigating disease mechanisms.

An early deliverable will be the establishment of a global research registry.

Says founding trustee Professor Robert Schenken: “The ASRM, ESHRE and WES have recognised the lack of large scale international clinical trials in endometriosis, the lack of overall funding for research into the disease and, not least, the potential overlap of effort from country to country when centres work in isolation and can’t share data.

This collaboration will allow us to share vital resources within the endometriosis community and work towards improving our knowledge about prevention, early diagnosis and treatment”.

The Foundation is a registered charity in the United Kingdom, but will operate globally. Its board has representatives from all three founding organisations, with the first board comprising:

Professor Robert Shaw (United Kingdom) – president
Professor G David Adamson (USA)
Professor Thomas D’Hooghe (Belgium)
Professor Linda Giudice (USA)
Dr Stephen Kennedy (United Kingdom)
Professor Robert Schenken (USA)
Dr Martyn Stafford-Bell (Australia)
Professor Carlos Sueldo (Argentina)

The board has appointed Lone Hummelshoj as Chief Executive.

It is possible to make donations to endometriosis research via the Foundation’s website:

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NOTES TO EDITORS:

1.
Endometriosis is a condition where tissue, similar to the lining of the uterus, is found in other areas of the body (mainly in the abdominal cavity). This tissue responds to a woman’s hormonal cycle. However, unlike blood in connection with the period, it remains within the body, where it bleeds and forms lesions, blood-filled cysts, and adhesions, resulting in inflammation, pain, infertility, and potentially other medical problems. Symptoms include: Painful menstruation, ovulation, intercourse, bowel movements, urination; fatigue; bloating, nausea, heavy bleeding; sub-fertility; and possibly a susceptibility to develop other diseases, including certain cancers. Treatments include: painkillers, birth control pills, hormones, surgical removal and, for some, hysterectomy. For most women, side effects are associated with all of these treatments, and none of them cure the disease. See also:

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2.
The American Society for Reproductive Medicine (ASRM) was founded in 1944 as a multi-disciplinary society to help form key legislation and fight for reproductive rights when public policy in reproductive matters did not exist. Since 1950 it has published Fertility and Sterility, and it also produces guidelines, minimum standards, committee opinions, and technical and educational bulletins. See also:

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3.
The European Society for Human Reproduction and Embryology (ESHRE) was founded in 1985 to promote the study and treatment of reproductive biology and medicine. It promotes research, organises education and advanced medical training activities, and publishes Human Reproduction. See also:

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4.
The World Endometriosis Society (WES) was founded in 1998 to foster research and promote the exchange of clinical experience, scientific thought and investigation among gynaecologists, endocrinologists, scientists, biologists and other qualified individuals interested in advancing the field of endometriosis. See also:

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Welcome Gemma I hope you find the website helpful to you and we are all here for each other..
Jen

At least now you know that you are so not alone and there are millions of us out here. Please be careful with considering a hysterectomy - they are not a guarentee and definitely not a cure. I know a few women who had them back before there was anything else available, their endo never went away, they are still in massive pain. In fact one of the women I know has even more growths in her body after the hyst and she was just diagnosed with breast cancer - the doctors believe may have been caused by the hormone therapy required after the hyst. Please explore all your options first - you never know what the future can bring.

Much love and prayers

NJAngel: Wise words that is for sure. I think what happens is that you suffer for so long in pain that when someone says that this will make it go away you jump at the offer.
At least I did. I truly had no idea that it wasn't a cure going in to surgery. I thought I would never deal with it again. So far I am lucky, getting tests for IBS to be sure its not Endo on my bowel, but you are right I have talked with a few ladies here that it has returned pos-hysterectomy:(

I would like to see the numbers on that. For me its been a new lease on life, I can do all the things that the pain stop me from before, but I have the ill effects of the autoimmune problems:(

I still feel blessed though.

Anyhow, research, talk and ask ask ask is all I can say before you make any decisions. You have to weigh the quality of your life etc as well.


Hugs

Welcome! I am so hapy to have found these boards. I know they will be so helpful and maybe just a place to know everyone here understands! I am sorry you are in so much pain. I am going through it too and am seeing a specialist in a week and a half. I wish I had a magic cure for all of us so we wuld not be in pain anymore! Deciding to have a hysterectomy or not is so difficult. My heart goes out to you. It is so hard to make such a huge choice that will affect the rest of your life. So many of us are facing that choice as well but I do have children so it is a little different for me. I would like to have another baby but I just want the pain to end as well. I wish you the best and hope for a way to control your pain!
There are so many great women here who have lots of experiences to share. It is so fabulous and yet sad at the same time. It is sad that so many women have to suffer....Here's to hoping for a better yr in 2007 for all of us!
Hugs,
Kel