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 🥺

@Redandpinkstripes , I was diagnosed with adenomyosis, following an internal ultrasound.

I had both a CT scan and a MRI scan. But I also had complex cysts on both ovaries and endo and they had some concerns that one of the cysts was not benign so wanted a fuller picture of what was happening everywhere. I waited a year between the consultant telling me that the ureter was being compressed and my op and she was confident that it would take longer than that to damage the kidney.

Funnily enough that is ultimately what got me heard too. When I was writhing around in agony, I would literally beg my husband to go and get me a Stanley knife so I could get it out of me (or at the very least I'd end up in hospital and they'd have to take it seriously)

My (male) consultant was a bit shocked that I'd feel that way about 'period pain', and I let him have it with both barrels

I can so relate to wanting to cut it out with a knife. Another terrible weekend of pain. The pain is hard to describe. I always say it's the dirtiest, nastiest pain you can imagine. I was woken up with the leg nerve pain again last night :( I hope everyone is okay xx

Thanks for starting this support thread.

I have adenomyosis and four large fibroids, two of which are 'in' the muscle wall. I was severely injured in a barbaric and botched hysteroscopy (to remove a large polyp) last year and so now I've got many other issues on top.

I'm on the 'urgent' wait list for a huge surgery to remove my uterus, fallopian tubes, ovaries, cervix, part of vagina, as well as colon resection and bladder stents because there's scar tissue and adhesions 'gluing' together all the left side outside my uterus. This is being explained away in a massive cover up as 'Stage 4 / 5 Endometriosis' but in fact it's where I was stabbed and cut through my uterus hitting my ureter, bladder, left ovary and colon. None of the areas with this sudden onset scar tissue that are all glued together were affected by any scar tissue, adhesions, or endometriosis prior to the botched hysteroscopy during which I felt repeatedly stabbed and was left crippled with pain to the point I couldn't walk.

I'm in excruciating pain and daily bleeding for over 16 months now. I've had to get a solicitor on my case.

I'm on daily mefenamic acid, tranexamic acid, provera, and codeine. It doesn't stop the horrific pain or the bleeding. I'm in agony every footstep I take, I've lost my health and fitness, I've gone up two clothes sizes, my stomach is bloated out beyond that again, like I'm well over 6 months pregnant, and I can't 'pull' it in or wear fitted clothes as the pain around the waist hurts too much.

I'm 53 and am assured that none of these issues can resolve with menopause, I agree, so hence the huge surgery which I'm terrified about but desperate for now. I'm gutted for anyone going through this horrific pain and inflammation.

I'm a bit confused about people saying they're taking the zoladex injection as well as HRT

As far as I was told by my Cons Gynae, the zoladex is to put a person in chemical menopause, it takes 3 sets of injections over approx 6 months before that's achieved.

To put someone in chemical menopause and then give HRT would take them back out of menopause and the symptoms would start again surely?

I'm so sorry you're going through this too. I also feel like taking a knife and slicing my abdomen open just to relieve the pressure. I told my doctors I will do this hysterectomy on myself in A&E if they don't book me in soon. They've been messing me around but hopefully any time within the next few weeks (it was supposed to be within 4 weeks three weeks ago but haven't heard from them with a date)

I don't know what's going on yet as I've only had an ultrasound but I got the report today

It says bilateral ovarian endometriomas 43 and 52mm. Appearance of kissing ovaries, scan indicating possible significant pelvic endometriosis

I'm waiting for a date for the specialist endometriosis clinic as they think my bowel is involved.
Always tired, always feel like I need a wee/have a UTI and insane period pain

Hi all. The only good solution in my experience is an understanding consultant. Mine just asked me how I felt about having a hysterectomy and if I'd had the kids I wanted. His attitude was if you don't need it and it's caused you so much pain over the years why keep it?
If you aren't under a national centre for endo/adeno (can't remember the abbreviation for it) then find out your nearest and ask for a re referral to one. I'm three years post hysterectomy and never felt better however I see my poor daughter following the same path and the troubles she has and it's heartbreaking

Jft. Thank you for sharing story. I'm so sorry you gave been through so much. You have been failed badly 🥺 How long have you been waiting on the urgent list? Xx

Unfortunately some people can't tolerate the brutal menopause symptoms 🥺
I agree though, it does seem a bit back to front. I did Prostap and the side effects were awful. I was put on add back hrt, which then flared up the condition. Nightmare. It just feels like we are all being used as Guinea Pigs!

Poor you :( That sounds awful and the long waits add to the anxiety/pain. I constantly feel like I have a uti too. I hope you get some answers/appointment soon 🙏 x

I'm sorry to hear your daughter is suffering. It's hideous 😢
I know I need a hysterectomy but how long will I wait. Seriously considering remortgaging at the point.
I'm seeing the consultant in a few weeks x

I've been on and off the list since last March. The hospital have played silly games.

I was told in March I'd need urgent surgery and was on the wait list. Everyone from GP to hospital to A&E stuck with that story and refused to discuss my case on the grounds that I would be 'having surgery soon' (the only solution to my issues). Then it transpired in August - after some hellish months - that I wasn't even on the wait list whatsoever. The consultant had documented back in March that I'd prefer to 'watch and wait' (never happened obvs).

I was then allegedly put on the urgent wait list mid-August but found out at the end of Sept I was on the non-urgent lowest priority and wouldn't be expected to have surgery within the next 18 months.

So then I complained and was 'upgraded' to urgent again and sent for 'pre-assessment' tests at the beginning of this month. I was told that as soon as the results were in, I'd be booked a date within 4 weeks for urgent surgery.

Never heard from them, chased it up a couple of weeks ago, found out that I had 'passed' pre-assessment but had been referred for an incorrect outpatient day surgery at a different hospital. I spoke to the surgery booking team who then rejected the booking on the grounds it's not for the correct procedure. However, they offered no solution. So again at that point, I actually wasn't on any referral or wait list for surgery.

At this point, I lost the plot, reached out to my GP urgently, spoke to PALS etc, made a complaint. That was shockingly quickly responded to, I saw a different consultant for discussion re surgery last week and am assured that I really am now referred for 'urgent' surgery in the hospital I'm under (allegedly within four weeks...).

They said that I should not fret, my surgery team is all to hand and it's totally under control.

Meantime as I said above, due to some form of statement on my NHS account saying I'm scheduled for urgent surgery, any time I've needed Urgent Care or A&E or even my GP in all of these months gone, they're fobbing me off by saying honestly not much they can do except check my urine and Haemoglobin and give me painkillers as the surgery is the solution to all of this.

I'm trying not to lose my mind and believe this surgery WILL happen.

That's awful! I too have messed about, so know how frustrating it is. Hopefully now it won't be long for you 🙏 It shouldn't be this hard 🥺

I can't wait for my surgery even though I'm terrified.

I noticed the other day that I'm walking like a pregnant woman! Kind of tummy out front, legs akimbo, feet turned out. It's cos of the pain and the swollen abdomen. I'm even holding my hands on my tender sore places. People will be thinking I'm the oldest pregnant woman in town and I'll be getting seats on the bus (mind you, I need them).

I totally understand where you are coming from. Just think though you will get your life back. That's what I'm holding onto 🙏💕

Yes! I'm just holding on and hoping. It's all we can do.

Things are becoming more clear and there's been tiny progression for me - I now have it confirmed in writing that I need the multidisciplinary surgery as soon as possible urgently. Also it will be conducted at the hospital I'm under which is the one of my choice (they had tried to refer me to a diff hosp). So that's great in terms of documented evidence.

And then I've had someone contact to book me in for a CT scan of my kidneys and ureters altho it's not booked in yet, as part of the surgery checks - so again thats showing movement towards the surgery actually happening soon or they wouldn't spend the money on the expensive scans.

Hello ladies
I am hoping I might be able to get some advice.
I have been suffering from heavy bleeds since the birth of my son and therefore requested an ultrasound from my GP. As I was worried about endometriosis.
They stated that my ultrasound came back all clear and doesn't show anything that requires further investigations. However I requested to see the record. In it it states
" The myometrium appears heterogenous. However, no obvious fibroid seen.
The endometrium measures approximately 8mm and shows a heterogenous echotexture".
Now upon googling those terms it brings up adenomyosis. Which has never worried.
I did have a c-section 3 years ago. I also suffer from bloating, pain during my period and sometimes pain during intercourse.
My GP insist there is nothing that needs further investigation. Should I continue pushing?

Thank you for your help

Hello

I have adenomyosis (and multiple other issues). The adenomyosis was picked up as I was referred for regular six monthly scans due to other issues - PCOS and fibroids.

After a few scans, I was informed by the scanning tech that they could see the size of my uterus wall itself was far larger and increasing markedly over time which seemingly is how they identified adenomyosis. They were surprised my GP and the hospital hadn't picked up on this and hence it's why they informed me directly. When I discussed it with GP she agreed it was adenomyosis and subsequently so did the hospital, despite all the other issues I've got (as personally, I'd imagine it's quite hard to say in my case but it wasn't).

Anyhow it was the incremental increase in the measurements of my uterus over time that flagged the issue. So, I guess the first thing you could do is ask your GP for regular scanning so you can 'prove' your case. However, the NHS being how it is nowadays, as you've got no other identified issue, they might decline. Unless you can argue that the scan measurements are already indicating swelling / inflammation - I'm not enough of an expert to know what specific measurements mean.

I don't know whether you could afford private scanning?

Meantime, did your GP recommend medications for the pain and heavy bleeding? I've been through the mill enough to know they usually offer a Mirena coil for everything (personally I declined as I have so many other issues). Or certain types of contraceptive pill. Also regularly taking an anti-inflammatory such as ibuprofen through the days of your period can help - or mefenamic acid which is a prescription NSAID anti-inflammatory. As well as tranexamic acid which helps clot and slow the bleeding and can shorten the days of bleeding. It helps to medicate right from the very first signs of period starting and not wait until it's fully 'on'. I find for pain, over the counter codeine and paracetamol helps a lot.

If you do have adenomyosis, or even endometriosis, they're long and slow to be diagnosed and the only cure for adenomyosis is hysterectomy. So I guess your GP and also gynaecology may wish to see far more evidence of suffering over time, which is really really rubbish in my opinion.

What I started doing was taking photographs of my saturated sanitary towels with a time and date stamp and documenting the size of any blood clots even if it meant fishing them back out of the loo. Plus keeping note of dates and symptoms on a period tracking app. Because unfortunately, evidence is everything to the NHS and they're in serious 'gatekeeping' mode these days. However, this involves bringing your phone to the loo every single time even if in public loos etc and can be a little messy so I kept some antibac hand wipes and my phone with me at all times.

I really hope for your sake you haven't got adenomyosis but regardless you're suffering / struggling with unmanageable pain and bleeding and you need help.

Hi ladies do you mind if I join?

having a horrific flare up today. And kick in the teeth I look like I’m 4 months pregnant, yet no such luck! (TTC a while and fed up of that too).

day 45 of my cycle still no sign of a period and the GP had no appointments left today. Calling me tomorrow.

I just feel so crap! :(

Sorry should have added- I’m 30, was diagnosed a few years ago (gynae thought that’s what it was from internal exams, then a laparoscopy suggested it too as part of a fertility related procedure).

I’m mid way through changing jobs and my employer has offered a counter offer today. They are fully aware of my condition and they are very flexible when it comes to appointments etc. biggest fear is going elsewhere and that not happening. Has anyone any experience of either?

Got a referral letter today
Estimated wait time, one year

Hi there. Yes you should, as an ultrasound not done by someone that specialises in Endometriosis/Adenomyosis, can often miss the signs. Sadly, i have only just found this out, so have suffered for years 🥺

Bless you. It is just so debilitating. Did you manage to speak to the gp?