Adenomyosis support thread

[Redandpinkstripes]

I posted this week about there being a high possibility I have Adenomyosis after struggling for many years. Another poster came up with the idea of a support thread, which I thought was a great idea.
I have been in severe pelvic pain, that worsens significantly before my period. I have had a few episodes where the pain has been so bad, I've almost passed out. I've had the Mirena coil, which has helped a bit. I was put on Prostap, which was brutal as they thought it was fibroids causing it. They then added HRT, which made my symptoms 100 times worse. I was signed off of work for a month. The pain was so bad I ended up in a and e. Even Morphine didn't touch the pain. After stopping the HRT, the pain has reduced but I still have really bad days. It affects my bowel and bladder too.
The pain is deep in my pelvis and left ovarian pain that radiates to the back.
It would be great to talk to others that understand, as there is so little out there. It doesn't just affect you physically but mentally as well 🥺

Something else I've read, and am testing is diet changes. I've avoided anything acrid or strong like garlic and chilli. I'm sticking to largely unprocessed simple food and trying to eat more green stuff. I'm down to only one small coffee a day. I use decaf for the rest of the day. No alcohol etc.

Thank you for your kind messages. You must have read my mind as I am currently sitting here with a plug in heat pad. I have the wearable one too :)
Tonight I've had an Epsom bath salts bath and used my massage mat from Homemedics and meditated. I'm now having a mint tea.
I also am trying dietary changes. I don't drink coffee and have 1 caffeine tea a day. I avoid anything spicy too. I've started intermittent fasting too. I started on Activia yoghurt but not sure if they are helping as I've had an upset stomach today.
I hope you are okay? Xx

@pieceofpasta
Do you mean like vertigo? I have experienced this in the past and its very unpleasant. I didn't get it with zoladex. If the side effects of the zoladex are unmanageable then you could try HRT but do be aware that it can exacerbate the adenomyosis (which you might feel defeats the point of having zoladex). It's like bring stuck between a rock and a hard place.

@Redandpinkstripes my mother (and her mother) were also 56. Only 5 years to go for me...

I had a trial of Symprove which did help with the bowel symptoms.

I find that heat helps with the pain, as does gentle exercise (if I can get moving in the first place).

Sorry, I missed this. It could well be the menopause. I felt terrible on Zoladex and they added in HRT which helped but exacerbated my original gynae symptoms. I can remember begging my gp for HRT as I felt like a flower that hadn't been watered (if that makes sense)
Maybe have a chat with your gp. I think Tibilone is better? I was on the gel x

Thank you. I've been told not to start the hrt for another month. I'm trying to get permission to start early

Good luck 🙏

Hi lovelies. How are we all doing? I've been referred to Gastro due to bowel issues. Does anyone else have bowel problems? Mine is mainly constipation and rectal bleeding. I've read it is connected due to the pressure of the enlarged uterus. X

Hope you get sorted.

I'm all good, entering the TTW for the first time, it's torture 🤦🏼‍♀️

@Redandpinkstripes I hope the gastroenterologist is able to help. My main bowel symptom is pain during and immediately after a poo. I've been told it's likely due to endometriotic tissue.
My uterus is the size it would be if I were 4 months pregnant, and it presses on my bladder, which has now become a bit overactive, so I am trying to retrain it to increase its capacity.

My bowel habits were all over the place, because my stomach and intestines were being squashed by a uterus the size of a late term pregnancy. My hysterectomy has solved all those problems, which would not have gone away with menopause.

Honestly it amazes (and upsets) me that they spend so long tinkering around the edges, but it is so hard to get them to solve the damn cause of it all. Once the womb was gone I was like a new woman, no pain, no bleeding, no 'IBS', no reflux, no recurrent UTIs, no anaemia, no hair loss

Thank you. Good luck 🙏💕

Thank you 🙏 It's a nightmare isn't it. I have occasional bladder incontinence too. I get the same symptoms as you. I am kicking myself I haven't got private healthcare. Everything just takes so long 😪

Thank you so much for posting. I know that a hysterectomy will solve the problem. It is crazy and wasteful how many people I have seen and opinions I have been given. I see it as a structural issue (enlarged uterus) so my hands are tied really. It doesn't matter what pain relief I use or diet I follow, they don't work!
You have given me hope though. I am seeing the gynae consultant soon and I am going to insist on a hysterectomy. Even the bowel and bladder service last week said they could feel how enlarged/bulky my uterus was on examination.

https://www.dailymail.co.uk/health/article-12644089/Naga-Munchetty-tells-agonising-womb-condition-dismissed-25-YEARS-BBC-Breakfast-presenter-48-reveals-wear-dark-loose-clothing-air-requires-toilet-free-times.html

Hey lovelies. How are you all doing? 💕

It was discovered that I had Adenomyosis whilst having a womb ablation procedure.

I was then booked in for a total, abdominal hysterectomy, which I had last December.
I was 45, now on bio-identical HRT.

No problems at all.

Allthefoodandwine. How long did you wait for the hysterectomy?

Had my first negative pregnancy test, cried a bunch tonight whilst chatting with my bestie.

Just trying to think positive thoughts about it all & not let myself feel too stressed.

Dreading my period arriving this weekend, last month was horrific for pain for 2 days. Thankfully this time it'll be half term so I won't have to be in work & trying not too vomit/pass out/both 🤦🏼‍♀️

Still waiting for official diagnosis but the consultant at Benenden said sometimes it's not picked up until hysterectomy. I bled every day from April to end of August and felt so Ill. Got so weak from blood loss I ended up in hospital. The pain every month was something else too. I ended up on pain patches but even they didn't get rid of it.
Benenden put me on zoladex and I'm still on it now. Agreed full hysterectomy but I need to lose just over a stone first.
The zoladex has been a life saver. Years and years of being told it's just period pain and now it's such a relief to know I'm getting it all taken out.
Mind you I think what did it was that I was in so much pain I was eyeing up a knife and could almost feel the relief of slicing my own stomach open to release the pressure. I didn't do it but came close. They finally listened to me then

I'm sorry to hear this :( You are right to try and think positive thoughts and not gey stressed, but it's hard. Thinking of you ❤️

Bless you. I can totally sympathise with what you are going through. I've just signed up with Beneden out of desperation. I'm not sure if they will provide treatment for a current condition but I'm going to see what happens after 6 months. How long have you been with them? I cannot understand wanting a knife. The pain is something so hard to describe.

I've just seen this and thought I'd pop on and say I had a full hysterectomy for adenomyosis and two womb tumours five years ago. Absolutely cleared my pain straight away, I was 38 when I had it done. I sympathise with you all as I remember the pain so well

Hello. I'm so sorry you're experiencing this pain. So I was diagnosed with endometriosis about 25 years ago and adenomyosis three years ago. The adenomyosis was causing bulging which was impacting my ureter. I needed a hysterectomy to avoid kidney failure. I'm assuming you have had extensive scanning but it concerns me that it is affecting your bladder.

Phonedown. Thank you for your message. Would a bog standard ultrasound show it? I also had a laparoscopy x