Author Topic: Endometriosis diagnosis & treatment?  (Read 3667 times)

Claire the Red

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Endometriosis diagnosis & treatment?
« on: January 22, 2010, 10:41:41 AM »
Hi everyone, happy new year!
I know some of you have / had endometriosis. If you would be willing to share a bit, could you please tell me how you got the diagnosis and whether you pursued any kind of treatment?

My GI doc suggested that endo might be contributing to my abdominal pain. After reading about it, it does seem like a plausible explanation. I told this to my GP, who normally does not take me very seriously, and she told me to start taking my birth control pill continuously to see what effect it has on my symptoms. I have been doing that for a couple of months, and think it has helped a little bit (maybe the placebo effect, who knows) but don't like it very much... sorry if this is too much information - now I get my period every three weeks (!) and have been experiencing a lot of breast tenderness. I am just starting to wonder what the next step is when I go back to have my checkup at the doctor next month. I wonder if I should press to get a laparoscopy, since my GP seems to think I'm a hypochondriac, or whether having one would actually help or just be a lot of unnecessary discomfort. It may be relevant to say I don't have any kids, and honestly do not know what my fertility status is (been on the pill for 10+ years) but my husband and I haven't ruled out the possibility of doing so in the future. Getting pregnant has not been high on my list as I have been pretty sick the past couple of years.

Thanks for any stories you can provide!


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Re: Endometriosis diagnosis & treatment?
« Reply #1 on: January 22, 2010, 01:31:45 PM »
Hi Claire

I'm sorry I can't answer your endo questions, as luckily, that's one gift I have not been given. However, I'm wondering if taking your pill continuously could be affecting your oetrogen levels. I take oestrogen hrt after a surgical menopause, and when my oestrogen levels start to drop, I get the breast pain. When this happened before the hrt, I found red clover supplements helped.

I hope you get the answer to yur question soon.



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Re: Endometriosis diagnosis & treatment?
« Reply #2 on: January 22, 2010, 01:51:50 PM »

I had endometriosis and had a hysterectomy at age 36.  If I had to do it over, I would have had laproscopy and had the endometriosis cleaned up.  They can do this and especially for women who still want children.  I was finished having children by that age.  Having your ovaries removed at an early age is no picinic because you have to find hormone treatment to accomodate your needs.  This is easier as you get older.

Endometriosis can cause pain and I had plenty.  Why don't you google all your options and weigh that with how much it is bothering you.  I have one friend who just had a hysterectomy due to severe pain and another friend who has it but has never been bothered by it.

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Re: Endometriosis diagnosis & treatment?
« Reply #3 on: January 22, 2010, 02:52:38 PM »
In 2000 i had a laparoscopy following 2 years struggle with both my gp and urologist as i had been having continued bladder pain. I do also have interstitial cystitis which was finally confirmed in 2003. It did turn out that i had Endomeriosis with several patches on my bladder which had wleded itself to my bowel. So much for it being in my head!!!!
It was a nice gynaecologist i saw privately who said he felt that this was one of my problems.
now for treatment. I was prescribed the pill but it had to be and i think i may have this right, a progesterone only pill. Its such a while ago. I took it for a while and abandoned it several months later as it did not really agree with me. I did get pregnant, several times in fact but lost them as i have antiphosphlipid syndrome. you can have laser treatment to burn the patches but i did not opt for this as sometimes this can cuse more adhesions than the stuff itself, and i already had my bladder stick to my bowel! There is also another hormone tablet, not the pill, that can be prescribed if you dont want the pill.
I would insist on a laparoscopy, its no big deal, a subtle couple of scars in your belly button and on the pubic line. You will wake with a little shoulder pain as they use gas to distend your tummy so they can see the organs and its refferred pain which responds to simple analgesics. Pregnacies are often helpfull in shrinking the patches and putting it into remission and sometimes it does not return at all. There is debate about this though.
Endometriosis is now thought to have a strong auto immune link so its not surprising its found in the Rheumatology area. I am glad i had this done because if nothing else it proved to my horrible gp that i was not a hypercondriac and i doubt you are either. A lot of women go on to have healthy pregnancies so good luck.


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Re: Endometriosis diagnosis & treatment?
« Reply #4 on: January 22, 2010, 10:24:07 PM »
Louisa -
Sorry to hear that you are worrying about this. I suffered from endometriosis for many years and by the time that I ended up with a full hysterectomy (ovaries and uterus at age 41), I had so much pain that I sort of hovered over a heating pad for 2-3 weeks out of the month.

One of the best ways to do diagnosis is a laporoscopy - a small fiber optic tube is inserted into your abdomen, usually near your belly button. If your  doctor detect adhesions (endometrial growths) sometimes they can be removed by laser in the same procedure. 

There are many approaches to endometriosis - use of male hormones that suppress the usual menstrual cycle, use of birth control pills to suppress it in a different way.

Everyone reacts differently - I refused the male hormones (testoterone), and the use of birth control pills was a disaster - I went from being in pain to being in horrible pain. But then, I seem to overreact to many meds!

Do find some books that are useful. I haven't dealt with this for about 10 years, so I just went to amazon, and searched, and a lot of the books look kind of "weird holistic sketchy". Check your local library and see what they have.

I'd be glad to share my experiences with you if you want to PM, but I do know when I was actively looking at this, I found a lot of conflicting info. So I ended up deciding my course of treatment based on what made sense for me.

Big hugs -  I know this just HURTS.
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Re: Endometriosis diagnosis & treatment?
« Reply #5 on: January 23, 2010, 01:31:33 PM »
Hi Louisa

I'm another one with endometriosis, although it's fading into the past now I'm 49 and apparently 'peri menopausal'. 

I didn't start my periods until I was 16, whereas my three sisters were all around 13.  I had problems from the beginning, with pain and heavy bleeding which blighted my last years at school/early college.  However, I wasn't able to take the Pill because I have heart valve damage due to childhood rheumatic fever.  I had surgery for suspected ovarian cancer just after my 19th birthday but it was just endo.  There was extensive scarring and adhesions, with damage to my right ovary in particular.  I was told then to have my children 'now or never'.  Two and a half years later I had my first child, and I've been blessed with three children although I also had two miscarriages.  In the years between babies and now I tried various treatments including Danazol, and anti inflammatories for pain relief.  Only acupuncture made any difference.  In theory all the endo patches should start to shrink once the menopause happens.  Can't wait!  I still have one area of severe pain in my lower right abdomen.

If I hadn't had the surgery I would have opted for a laporoscopy so I knew what I was dealing with.  Having said that, I have read that they can't always see the adhesions hidden behind the bladder or in the pouch of Venus.  There's also anecdotal evidence that the level of pain experienced doesn't necessarily correlate with the distribution of adhesions and scarring ie maybe it doesn't look so bad but you can really be suffering.

The more reading I've done about endo, and about SjS, the more I realise that these AI conditions often come in packs.  Where endo ended and SjS began it's hard to say.  I thought all my exhaustion and pain were due to endo but now I wonder if some of it was SjS developing years before I realised.

I'm happy to chat about this more if you want to PM me.  You could also look up earlier discussions by putting 'endometriosis' into the search box at the top of the main page.

Thinking of you - Chickpea


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Re: Endometriosis diagnosis & treatment?
« Reply #6 on: January 25, 2010, 12:10:29 PM »
My best mate had Endometriosis very very badley. She had it on her bowel to and ended up with her ovaries stuck.

She suffered for about ten years but has had 2 children in that time with a miscarriage to.
She was in severe pain all the time and infact found it difficult to walk  a lot of the time.
She went to the dr for years and was diagnosed with different things including irritable bowel.

She had a laperoscopy which showed a small amount of endometriosis but they told her it wasn't much. She was put on the mini pill which had no effect what so ever. They did lazer surgery then to remove the endometriosis but it just grew back in different places and had little effect. She then went and got steralized to see if that would help and when the went in to do the operation they found that the endometriosis was worse than they first thought. The sterilization again didn't work so they were running out of ideas.

In the end they decided to try Zolodex injections which put you through an early menopause while your using it and they say that if they work then you will benefit from a hysterectomy. She went ahead and at the age of 31 has a afull hysterectomy and has had no problems ever since. They found that she had severe endometriosis and in the end had to open her up to do the hysterectomy as ovaries were stuck.

It's really not a very nice condition and i hope you get some good advice soon .

Claire xxx


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Re: Endometriosis diagnosis & treatment?
« Reply #7 on: January 25, 2010, 12:30:00 PM »
I too had endometriosis but at the age of 27. I am now 56. I had to have a complete hystorectomy as mine was so bad. They did not do Laporoscopy at that time. My Gyno thought I had Pelvic inflamitory desease. He fooled with me about 2 years and I weighed 85 lbs by the time he did the surgery. I was on hormones for about 20 years then my GP wanted me off.

Also my daughter has endometriosis also but had the laporoscopy and she was cleaned up. She had 5 leasons. She was able to have 2 precious daughters after that.

Good luck. at least now they have the lap and can see what it truely is.

hugs harlin

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Re: Endometriosis diagnosis & treatment?
« Reply #8 on: January 25, 2010, 04:00:21 PM »
Claire, I had endometriosis and had a laparoscopy back in 1992.  My bladder was attached to my uterus and one of my ovaries was attached to my intestines.  Before this, my periods were nearly unbearably painful and heavy.  My doctor put me on birth control pills after the surgery but warned me that I would probably have to go through it again down the road.  Nearly 20 years later I'm still doing great without any reccurance.  I guess I'm one of the lucky ones that birth control pills don't bother and now I'm on the kind where you only get your period 4 times a year.  I hope you can find something that helps you because endometriosis is so awful to have to live with! 


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Re: Endometriosis diagnosis & treatment?
« Reply #9 on: January 26, 2010, 04:58:53 AM »
I would def have the lapascopy surgery to confirm...all the tests in the world wont show that darn endo!!! I ended up having endo and my doc talked me into
a total hysterectomy, which was the worst decision I made in my life. Not only do I deal with chronic migraines, huge stomach bloating, gas, anxiety, extreme hair loss,
mood changes, weight gain without eating,  neuropathy, seems to have made my sjogrens 1000 times worse. I tried 10 different doctors and all kinds of hormones, but they all seem
to make me flare even more. I would gladly deal with that endo pain anyday..the endo can even come back after a hysterectomy as well. I would have the laparscopy and go from there.
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Claire the Red

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Re: Endometriosis diagnosis & treatment?
« Reply #10 on: January 29, 2010, 05:28:56 AM »
Hi everyone,
Thank you SO MUCH for your stories and input. This is really helpful! Yesterday was actually a bad day for the pain and I was moaning and groaning to the hubby. I'm glad I am not the only one who reacts badly to the pills! Also, I would not be surprised if they discovered some of my organs are connected in strange ways. After reading all this and thinking it over, I will probably request the laparoscopy when I see my GP on 2/17. Might also ask my doctor about a regular NSAID programme that will help the pain but not ruin my liver in the process.
Thanks again, I really appreciate the feedback! I will let you know what happens.

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Re: Endometriosis diagnosis & treatment?
« Reply #11 on: February 01, 2010, 04:05:41 PM »
I had enemetreosis and had 2 oblation surgeries and then a partial hysterectomy.  I also have bladder issues with  the tissue being grey and not healthy and have had some spots removed.  I take Elmiron to try to keep building the lining of the bladder.