HELP PLEASE - Adenomyosis questions

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.

[fishee1204]

Hello,

I'm so sorry they couldn't find anything new given your pain.

I've recently had surgery including 2 bowel resection and multiple excisions for endometriosis and my symptoms were similar. I didn't know I had adenomyosis until I had an MRI pre-surgery, however I did wonder why intercourse had become almost unbearable.

Essentially, adenomyosis is similar cells to endo but they have grown in the uterus muscle so the only way to remove them is to have a hysterectomy. I'm hoping, even with my blocked tube and 'requiring further procedures', we can still ttc as that was the whole point of my 18 month long surgeries/procedures so far but will have to wait and see. Will definately be begging for a hysterectomy once I get the final yes/no though.

I hope you are booked an MRI and receive a more detailed plan of treatment when you see them.

I hope this helps. Good luck

[Hidden in reply to fishee1204]

Hi Fishee1204

Thanks for your reply.

I am not booked in for an MRI as far as I know. My last 2 surgeries my endo was quite extensive and they have said I have nerve damage in my pelvis from these deep growths which could also be causing my pain.

I am seeing the team again in just over a week so I will be looking for answers then. The one thing I am not happy about is to be told I just have “chronic pain” because I find it odd how I was fine during the menopause and as soon as I came out of it it all started again.

Thank you

Lauren