Both Endometriosis & Adenomynosis

[ThatPlumPeer]

MRI results showed both and I’m a little lost, anyone have this diagnosis? I have been referred to a endo specialist to discuss treatment so the wait begins

It also showed my ovary is attached to my bowel which will explain the intense pain I have been having. Suppose I’m just seeking reassurance and succesful treatment stories xx

Yes I have both
I had excision surgery to cut out the endo and a mirena fitted for the adenomyosis

And has this helped with the pain management and symptoms? X

Definitely so far but I’m very early on - I only had the op end of May and haven’t had my post op yet!
I have stage 4 deep infiltrating endo and they did this in surgery, I had a bowel surgeon and an endometriosis specialist surgeon

Adhesiolysis, mobilisation of sigmoid and rectum, bilateral ureterolysis, drainage of bilateral endometriomas, stripping of cysts walls, temporary suspension of ovaries, excision of endometriosis, restoration of anatomy, dye hydrotubation, mirena IUD insertion, appendix removal

Oh wow that sounds like a lot! You are such a warrior! Glad it’s looking positive for you, I know I have a long journey ahead, just hard to mentally prepare x

it was around 2 years from finally getting a GP to refer me to surgery but it was very complex with the multi disciplinary meetings etc and I was in theatre for a full day (9.30-6)

I have both and had a laparoscopy just over 2 weeks ago where the surgeon excised the endometriosis and also cut adhesions I had from my c section and had a mirena inserted aswell. Happy to answer any questions you might have ☺️ xx

@ThatPlumPeer Are you symptoms just on your period or elsewhere during the month? Also what symptoms do you say you have? Have you had long-term and chronic issues with mobility, back and sciatica, debilitating pelvic pain, pain with sex and insertion to the vagina, severe vomiting and nauesa, cycles of severe constipation and/or diarrhoea?

Ask the GP to try the pill and/ or mirena coil can be amazing with heavy bleeding and pain. The mirena will may the uterus lining thinner, less bleeding and less cramps).

Also ask your GP for mefenamic acid and/or naproxen (NSAIDs which help a lot) and tranexamic acid (helps reduce heavy bleeding) - you need to start taking it days before your period starts so that it can work at best capacity. The same with ibuprofen and/or paracetamol. Start taking it 3/4 days before and it will be much better. If your endometriosis pain and symptoms are managed quite well/go away (with the pill and NSAIDs, then you likely have less severe endometriosis in terms of symptoms and impact on life).

But endometriosis is a chronic illness and cannot be cured, after surgery it will grow back, it cannot be excised from everywhere to leave organ functioning intact and then post-surgery adhesions often form.

The main symptom of endometriosis
is not actually period pain because endo is not a period condition - it's a whole body inflammatory condition
where the endometriosis tissue even produces its own oestrogen and the pain is felt throughout the month not just when on your period. Often endometriosis on the ovaries can form cysts containing old blood called endometriomas (also known as chocolate cysts) which can be very painful. Another popular cyst is haemorrhagic ovarian cysts with endometriosis.

. Main endo symptoms:

• Irregular or heavy periods

• Pelvic pain

• Pelvic pain on opening bowels (dyschesia) and wider gastrointestinal symptoms (diarrhoea and constipation)

• Pelvic pain on passing urine (dysuria) and bladder symptoms sometimes

• Referred pain to the tops of the legs or back

• Fatigue

Pain management depending on how severe your pain and symptoms are (can be opioids - for more severe and disabling endo (most GPs/gynaecologists only prescribe it temporarily, NSAIDs) and contraception and hormonal treatments (gonadotrophin releasing hormones).

The links below have much more detailed and useful information.

https://www.leedsth.nhs.uk/patients/resources/endometriosis-2/

https://www.nhs.uk/conditions/adenomyosis/

The stages of endometriosis are actually about how it impacts your fertility - not had painful it is or if its disables you or not.
A higher stage is about a bigger impact on fertility but not pain.So a person with stage 1endo could be disabled by it and have severecomplications, but a person with stage 4 may not.

I have endometriosis, adenomyosis and other unrelated conditions, I am disabled by it. Cannot walk or stand lots (across the whole month with or without a period, and use a walking stick/rollator). Drugs to stop my period do nothing as my period whilst painful is the least of my worries (even without it every day is horrible so it doesn't matter personally to me). For others it's life changing. Again mirena for years nothing (horrible initially and worsened bleeding - this happens to many people and then settles but has gotten worse over time with me. I live on high dose opiods (I wouldn't if I didn't have to but it means I'm not completely bed bound). Again I've maxed out NSAID doses and have chronic cycles of constipation and diarrhoea (going through both gastrology and colorectal surgery) and sevre bladder issues including incontinence and an overactive bladder (I see urology as well), persistent thrush etc and vaginal cramps all the time which are incredibly painful. That's just a summary, honestly most people find relief from many and at least one of the things I've tried so don't worry (anecdotes are not stats and i have other health issues etc). I will likely have and try to have as regular excision surgeries as possible but will likely soon need some of my bowels removed permanently and over the years we'll see what happens with my bladder. I'm trying to get a uterine ablation soon and also see the chronic pain clinic soon as well for palliative care methods. Try it all though as for most people it brings loads of relief and means they can long-term manage their health.

How was the news broken to you @ThatPlumPeer and do you have good doctors? Have they made a treatment plan yet or no? Sending love.

I have both, but I'm clearly not as impacted as some others on this thread. I got diagnosed as I had constant low level bleeding and sharp pains on one side during my period. The adenomyosis was causing the constant bleeding and one of my ovaries is stuck to my uterus due to endo and was being pulled about during my period.

I am not keen on surgery. I've been given the mini pill instead. My gynecologist said that the hormones from the merina wouldn't reach far enough to deal with the endo.