HELP PLEASE - adenomyosis and questions - Pelvic Pain Suppo...

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HELP PLEASE - adenomyosis and questions

laurenemza
laurenemza

Hi everyone

I just want a bit of advice about a few things - firstly adenomyosis (please read on) a and secondly some clarification regarding some things I have been told (at the bottom). I am feeling quite confused and unclear.

For those of you who have read my previous posts you will know that I was placed into the medical menopause (decapeptyl) from summer 2017 to January 2018, and since coming off I have experienced severe endometriosis pain and symptoms. These included;

-severe pain that was preventing me from going to work

-pain during and after intercourse

-intense pelvic and abdominal swelling

-flared up urinary symptoms

-very heavy and long periods

I recently underwent a third laparoscopy done by an accredited endometriosis center and specialist in Bristol (I was referred there by my "old" gynaecologist because this center was best at handling more complex cases like myself).

After being in theatre for almost 2 hours, I received the news that they had found "no new endometriosis growths" (bearing in mind that in my last 2 laps - both a year apart - my endo has spread and spread). Now, this is a good thing - it means that the medical menopause has done its job. However, it does not explain why I have been in severe pain with worse endometriosis symptoms.

The surgeon came to see me after my operation. Long story short, they have suggested a few things that are likely to be the source of my pain.

1) endometriosis scars/adhesions from previous surgeries (they did not want to remove these as they believed they would just grow back and cause more problems), particularly evident in and on my bowel

2) pelvic nerve damage (from where the deep endometriosis from previous surgeries has been removed, the nerve endings it grew remain and still cause symptoms etc)

3) adenomysosis

Now, they have told me that my above symptoms, and the fact that the medical menopause was so beneficial to me (it seriously got rid of 99% of my symptoms), that they are of the opinion I have adenomyosis too. They explained to me that the only way to diagnosis it "properly" is via a hysterectomy, which I do not want right now. I am due to the see the team again in 10 days to go through everything and discuss treatment.

Does anyone have any experience of adenomyosis? Did anyone else get diagnosed like this during a lap?

Secondly, I would like clarification on a few things. These are things that the surgeon told me yesterday that during my many years with endometriosis I have either never heard of or heard of differently.

1) endometriosis is something you are born with - they explained to me that at the moment my "endo cells" are dormant but could grow again at any minute

2) if I were 30 years old and they'd found no new endometriosis growths, they'd have told me I "didn't have endo any more"

3) adenomyosis is not linked to painful intercourse or pain after intercourse

Thank you in advance.

2 Replies

My doctor suspects that I have adenomyosis. Everything else has been ruled out. I will be having a TVH on Wednesday, with pathology of the blasted thing to follow.

That being said, adeno can cause pain with sexual intercourse, painful bowel movement, pain with urination, basically pain where any shifting\ movement occurs. All the symptoms you listed above can be caused by adeno. There is also the chance that multiple conditions are present.

laurenemza
laurenemza in reply to Aksunkist

Hi Aksunkist

Thanks for your reply.

Yes I have Endometriosis as well. Maybe adeno does fit after all. Hope your TVH goes ok.

Lauren x

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