REPOSTED - replies wanted - help please! Adenomyosis and questions

Hi everyone

I have reposted this as I would like replies please.

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.

[Tinker777]

I have been diagnosed with adenomyosis & they did a biopsy internally which confirmed it’s not cancerous they have offered me ablation treatment which is ultraviolet light within, not had that yet going July. But also said hysterectomy which I’m not having & said probably will be going through menopause soon so it will decrease & dissipate.

[Hidden in reply to Tinker777]

Hi Tinker777 thanks for your reply! I don’t think they did a biopsy. Yes I was thinking about ablation treatment. I am going to ask them all these questions when I see them next week! I don’t want a hysterectomy just yet either xx

[Tinker777 in reply to Tinker777]

Exactly, I think sometimes their too quick to say that to you. Good luck, the biopsy is non invasive too,

[Hidden in reply to Tinker777]

Thanks Tinker777 ! X

[edaniels2324]

I was diagnosed with Adenomyosis after my hysterectomy. I've had 5 surgeries in a year, and my pain is horrendous. I can't find a doctor to help me.