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 🥺

I would stay stick where they are being supportive. My company have been amazing and it makes such a difference.

The waiting times are awful atm 🥺 The best thing I did was pay £200 to see a private consultant. He then took me on as a nhs patient. I am on minimum wage, so it wasn't easy but I would do it again in a heart beat x

Sorry I haven't posted much. I have been in so much pain and it isdragging me down
Despite having a Mirena coil, I'm bleeding heavily and am in constant pain/discomfort. I am sitting at my desk with a heated pad everyday. I am seeing myconsultant next week, so let's hope I get a plan. I cannot carry on like this 😩 xx

The annoying thing is I've seen a consultant at a private hospital via NHS but they've had to send me to a larger hospital not private as the private one doesn't have a bowel surgeon

Oh, I see 🥺

Spoke to the GP yesterday. He wants to give me coil or pill but because I want to conceive neither are an option.

he gave me stronger pain killers, some buscopan and has told me to stop breastfeeding (DS is 2.2) which means my hormones should balance enough to refer me to fertility clinic (they can’t do that when breastfeeding!)

so I have a plan but need to grin and bear the pain until we’ve had another baby basically.

trying not to be too upset!

That must be so hard :( I have the coil and it has helped a little bit but not much tbh.
I'm sorry you are having to suffer. It is do wrong! Is the Buscopan helping? I was prescribed some too but I'm not sure it did anything.

I'm in the exact same boat.
They've been pushing the coil for me but because I want to have a baby, it's not an option currently.
Month 2 TTC our first & I'm not overly hopeful 😢

I’m sorry you’re going through it too. It is tough.

I have PCOS which is the root of our fertility issues I think, with Adeno on the side- I was always told it’s not the adenomyosis preventing us having a baby but the pcos. Not sure how true that is, but if it is, please take some comfort from it that hopefully you will conceive soon!

I looked back at my diary from last time and after 3 years TTC we eventually did it. Lots of appointments, not easy, but we did it and I had a lot of relief from my symptoms whilst pregnant and in the first year or so of breastfeeding. So there’s that to look forward to too!

@Redandpinkstripes i think the buscopan is helping, it’s definitely not stopped the bloating completely and it’s giving me a really dry mouth but it’s alleviating it a little bit I think!

Oh bless you. Im in severe pain (pelvic and back) currently sat here with a hot water bottle and taken ibuprofen. Its not working. Been constant now for over a week and I'm just exhausted. I have to have a laproscopy on Thursday and a biopsy. Im at the point now that I want a hysterectomy

Good luck for Thursday @Vixtar2303, have you plenty of peppermint tea for afterwards? How was your weekend pain wise?

im on cycle day 50 today, still no sign of a period and the pain is awful. Naproxen and Buscopan are doing nothing now, everything feels so “heavy” if that means anything to anyone! 😫

I've got CT scans today in advance of the surgeons discussing my case in their team meeting mid-week. I'm hoping they'll book me straight in for surgery.

I didn't have any endometriosis until I was severely injured in a botched and unlawful hysteroscopy last July 2022 - now a whole area of my tissues in the area I felt 'stabbed' are all glued together with scar tissue, the pain is horrific and I'm daily bleeding 24/7. I'm crippled in pain that only very strong codeine can touch but that means I can't function when using anyway. Been living like this for 16 months now and have completely lost my health and fitness, gained weight through no fault of my own, I am struggling to walk, can't do any exercise or the pain and bleeding worsens.

Anyway am now hoping and praying they will book me in a date ASAP after the team meeting today, I'm supposed to be the highest priority urgent case.

For people struggling with pain, I can only recommend over the counter codeine and paracetamol - Boots do an own brand 12.5mg / 500mg also an anti-inflammatory all day every day. It's a living hell.

Hello lovelies. I'm sorry i haven't been very active. I'm sorry to hear so many are struggling with this awful condition 😢
I saw my consultant recently and I feel so low. I had a laparoscopy in August and no Endo was found but they did say I have a globular uterus, which is probably caused by Adenomyosis. I wasn't surprised, as I have all the symptoms. I met with the consultant and he did play my symptoms down. He said that the globular uterus could be caused by Adenomyosis and offered me a hysterectomy but couldn't promise that would solve my issues. It's a 12 to 18 month wait.

I then queried the previous diagnosis of 2 fibroids pressing against the bowel and bladder, one of which was nearly 6cm on the scan. He said that wasn't seen in the laparoscopy and he was sending me for an urgent MRI.

I just get this feeling I am not believed. The constant pain and discomfort is making my life a misery. I just think they think it's all in my head 🥺😪

I'm so sorry @Redandpinkstripes . It can often feel like one step forward, two steps back! Do you have a date for the MRI? And even once the diagnosis is complete the wait for any treatment is long and painful.
I waited so long that eventually my husband suggested we take out a loan to have my hysterectomy done privately but when I raised it with my NHS consultant (who also works privately) she explained that people with endo/adeno/cysts etc often have complications during surgery relating to the bowel/bladder/ureter and so there has to be a team of specialist surgeons available as well as emergency/ICU facilities. My local private hospital doesn't have any of this. it's great for hip and knee replacements but that's about it.

But this leaves people like us in pain for a long long time.

One way I was able to help manage my pain was to avoid wheat and dairy. I'm not coeliac but do have a mild intolerance (as many people do) to both. Not eating them meant less inflammation in my body which in turn did help to not make my endo/adeno pain worse.

Thinking of you 💐

I have adenomyosis along with endo, ovarian cysts, retroverted uterus which is fused to my bowel and fibroids so I am booked in to have a full hysterectomy and bowel resection on Sunday 19th Nov. I've been in pain for many years and was told it was stress and IBS by GP's, turns out they were all wrong. I've been having zoladex injections alongside combined HRT which did help slightly but the pain is now constant so I'm hoping the hysterectomy ends this pain.

There is no where near enough education or support for adenomyosis. Its only just starting to get in the public eye now and when I speak to people about what I have they always seem to know someone who has it so its not a rare thing.

Thank you phonedown 💕. It's just been such a horrible journey. 12 to 18 month wait with no assurance that it will stop the pain 😢
I have cut out wheat and dairy and unfortunately it didn't help. I'm glad it is helping you. Phonedown - have you had your hysterectomy?
I should hear within the next week for the mri 🙏

@subolooo

I'm so glad you're booked in for surgery and I hope it goes well. I have pretty much the exact same issues and am booked in for the 29th Nov. We're going to be free of this living hell soon!

I can honestly not stress how unlivable my life is now and had the surgery not been scheduled so quickly, I would have been thinking of taking my own life / severely harming myself so as to be forced in via and A&E emergency surgery. Which is ludicrous when the horror can be resolved by a surgery (and is not resolved or helped with any form of medication).

Yes. I had everything removed a year ago and even though I am still exhausted and have gained a lot of weight on HRT, I have virtually no pain which is amazing and such a relief.

That's good to hear. Sorry you feel exhausted and have gained weight on HRT though, I'm not going to pretend to understand the first thing about HRT but are you sure you're on the right combination / levels? I was hoping when pain free to be feeling fit and lose the weight I've gained from being in pain.

I'm 53 and a half and have had no signs of menopause starting yet (for example I've never had a hot flush or missed any periods) so when I have surgery I'll go straight into menopause, which terrifies me. I was assured by my GP that the hospital will address HRT etc but when I saw one consultant recently she said there's no need, I was a bit shocked by that.

Also another question - did you need colon resection or anything colo-rectal. I'm terrified of this aspect of surgery and haven't met with an colo-rectal surgeon or had any scans / investigations but am told this is a very likely part of the surgery I'll have. I'm not sure even what the implications are and how long healing will take?

Good luck Suboloo. Let us know how it all goes on Sunday 🙏💕

Phonedown - that's brilliant news that you are no longer in pain 🙏 I'm sorry to hear you are exhausted and have gained weight. It's a viscious cycle 😢

Hi. How did your hysterectomy go. I hope you are recovering well x

Hey warriors. I need some pain advice. So I have adenemyosis and ovarian cyst. I have had excruciating daily pain now for 3-4 weeks straight, the bleeding has just started (about 4 days ago) the other night I was sat on sofa and coughed and literally had a bleed out. I got up to go to kitchen to sort my out (couldn't make it upstairs to bathroom) there was a a trail of blood and when I looked at my pad there was huge clot the size of a tennis ball or bigger. Do you think all this pain was the build up to that bleed. Im still heavy bleeding with small clots and the pain in lower left pelvic area and back pain is still there. I literally cannot do anything as in pain constantly. I suffer really bad with anxiety and all of this is making it worse. I take ibuprofen and paracetamol for pain as I'm so paranoid about taking tablets. But I need something stronger that will take the edge of this debilitating pain. I have a phone consultation with a gp today so could anyone recommend good pain killers that actually work with no side effects. Thankyou for reading. You are all so amazing and warriors of this awful disease xx

Hi @Vixtar2303 sorry to hear you’re in so much pain and such a heavy bleed!

I’ve had cysts before too but never as big as what you describe- personally I’d be wanting to have a scan to check noting retained in there and that it was a cyst you have passed and nothing else.

naproxen takes the edge off for me but sounds like you need something for the bleeding. If you haven’t already had your GP appointment I’d be pushing for an urgent scan. Tbh I’d have gone to A&E or called 111 when seeing the clot that size! And I don’t go to A&E for anything

hope you feel better soon