Endometriosis Treatment?

Question

Hi - don't know if anyone can help but I have been diagnosised with endometriosis at aged 26. Docs are not prepared to do anything more than pain relief althought I have been going down this route for about 3 years and have tried pretty much everything to the point my Pain Management Consultant has offered to put me on oral morphine. This is just affecting my life so much - I was looking forward to travelling and doing my medical degree but I can't if this isn't sorted out (then pain killers I am on - Tramdol, voltarol, paracetamol - are not effective and I get really horrid side effects like nausea, vomiting, tiredness etc). Just really feel that since the diagnosis, everything I have dreamed about has been taken away & I don't know what to do. I have a demanding job that I have already taken time off for due to being in hospital a couple of times with this. I don't have a partner and doubt I'll ever get one with this condition as well. What can I do? Thanks!

Answer 1

Discuss the idea of surgery with your doctor. I was diagnosed with endometriosis at the age of 16, and I understand how painful it is.

I'm 25 now, and I've had laparoscopic surgery twice. Basically, my doctor made two small cuts above my hip bones and inserted a small camera. He looked around and found the majority of my lesions and removed them. This is not a permanent solution, and endometriosis usually will come back. However, my pain has never gotten as bad as it was before I had surgery the first time.

If you're not on birth control, you should definitely start taking it. It will regulate your cycles and make your periods easier to bear. An "old-timey" home remedy is to take a tablespoon of peppermint schnapps when you're in pain. By the way, I don't suggest you start taking oral morphine. If you think that the side effects of tramadol are bad ... morphine is about a hundred times worse.

Answer 2

Did you know medical experts think there is a hereditary link to endometreosis? I, too, have it as did my mother and sister. I was diagnosed at 19 and tried the "then" treatments from various birth control pills to Depo shots, etc. At age 26 the damage was done, the pain was beyond control, I had tried the latest medical procedure (see below) that had just been approved, and the bleeding was continuous. I had no choice but to remove the uterus.

There is a medication (very expensive when I took it) that has proven to be very effective called Danozol (look it up on www.webmd.com). For many women it has been a life saver and prevented (or at least delayed surgery). The side effects when I took it were not pleasant (more hair on body like face, lower libido, deeper voice) but it did delay for more than a year my need to surgery. At that point my gyn said, if you don't want kids why suffer and we made the choice.

Go see a specialist, not just an ordinary gym, in endometreosis. Read up on it. Understand why the pain, e.g., chocolate cysts that build like the uterus does for each mensus without any place to "leave", etc. Some people chose the surgery route to remove the growths. Some women find that getting pregnancy (which is very hard) either stop or temporarily put in remission endometrosis (my mother).

Most women with endometreosis have very high estrogen levels (why back then the birth control pills only worked temporarily). The Danozol type medication stops both the estrogen and the progesterone production, hence putting the disease in remission. For some that can be very long term though in my case I still ended up having the hysterectomy. And after another "round" of Danozol three years later what was left of my ovaries (one attacked to intestines and ruptured) I had the opharectomy.

Did you know Marilyn Monroe had endometreosis which is considered the biggest cause of sterility in women, considered a dibilitation disease with symptoms like depression, pain and painful intercouse?

Find yourself a doctor who listens and knows the impact of endometreosis and is willing to work with you through various hormonal trial (like Danozol). Read up on the web including the support groups, which were not there when I was diagnosed.

And don't think you won't find a partner because you will. There is a good life beyond endometreosis.

Answer 3

I was 30 when I was first diagnosed with endometriosis, after the unbelievable heavy bleeding during the periods. I had my first diagnostic surgery in 1998 and they also removed some of the lesions and the cysts on that occasion. From that point on it was a crazy dance with my life revolving around my disease and the days of my life going by me as if I was just a spectator. I was on Lupron that offered some help but destroyed me financially.

My parents were basically living on the verge of poverty just so that they can help me pay for my Lupron. I had a partial hysterectomy in 2005 and I was a bit better for approximately a year. And after endometriosis and pain returned in 2006, I remember that I just gave up any hope that I will lead a normal life ever again.

I was never able to maintain a healthy relationship and I gave up on that, too. I found out about this eBook (http://tinyurl.com/EndometriosisB ) on the internet and the few clicks changed everything. I could not believe that I have been suffering needlessly for so long. I will not be able to have children because my fallopian tubes and ovaries are removed, but I am just thankful that I am again able to lead a healthy full life...

Answer 4

I do sympathise with you - there is an Endometriosis Society in London - here is a web search

http://www.google.com/search?q=Endometriosis+Society&rls=com.microsoft:en-us:IE-Address&ie=UTF-8&oe=UTF-8&sourceid=ie7&rlz=1I7SKPB

Also a book from the library - Understanding Endometriosis

Diet is an important factor, Selenium ACE supplements also recommended by the Society.

I would try and avoid the morphine - it is addictive and you may find you have an additional problem.

I use to take Ponstan Forte _ a pain killer with anti inflammatory - I think also prescribed for migraine sufferers.

I know how painful it can be - do investigate how you can help yourself - it is a disorder that cannot be cured by orthodox medicine - but there is a lot one can do to help alleviate the symptoms.

Lots of fresh fruit and veg is essential to lessening the pain symptoms I have found from experience - you may also benefit from taking star flower supplement - do speak to the people in your health food shop too, but first and foremost get in touch with the Endometriosis Society.

Good Wishes.

Answer 5

I really feel for you. I just had a hysterectomy 4 months ago because of this. But before this they put me on Lupron shots. They really helped the syptoms tremendously. If this is something that has not been tried I would discuss it with your doctor. Good Luck!!!! Another thing I am the one that chose to go ahead and have the surgery. I already knew that I didn't want anymore children and knew that it was best.

Answer 6

Hi. What I learned in obs/gyno class was that
a lot of people feel better when going on a vegetarian-like diet but depending on how much you love meat that could prove difficult. Many women also use fish oil although the effect hasn't been documented yet but i think it's worth a try.
Otherwise it can be removed laparoscopically but of course it depends on the location of the elements. Maybe you should try talking with another gynocologist?

Answer 7

You really need to read "Endometriosis Bible & Violet Protocol" by Zoe Brown (also available in electronic format here: http://www.endometriosisbible.info ). It's about how to eradicate endometriosis disease forever. It worked for me, you will see results in only a matter of weeks. Good Luck!

Answer 8

I'm so sorry. I understand putting off the operation........I nearly bled to death (really) putting mine off. You are so young, and that is so sad for you. Let me tell you this, though. I did have the operation, and I never felt better in my life, afterwards. It was like night and day. Unbelievable pain, total flooding of blood at the most inoportune times and places.........flooded the floor of one place when I was sitting on a chair in that room! I was always in so much pain, that I did not even NOTICE, until someone pointed it OUT to me! So, I had the operation, and felt like a magic wand had just made me feel like a million dollars! I realize you'd probably like to have children.........there are other ways of being a mother. Save yourself this misery and have the operation that just makes life a totally different WONDERFUl place to be. Let me know, o.k.?

Answer 9

like u endo has taken over my life i have had op's but have not worked for me my reut at the mo is to have a baby im not sayin thats for u but what i am sayin is please please do what i did and reseach it like mad u might find some thing that helps u that i havent when im not on the net my husband is so anything new i will be puttin on answers keep an eye open good luck x x