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 ended up in a&e with them querying appendicitis as I was in so much pain
Another ultrasound done and my endometriosis cysts are a bit bigger. Thankfully it has actually pushed me up the wait list and instead of a year, I'm seeing an endo specialist in February
I think they said they might do an MRI to get a better idea of what's going on

Saying hello 👋 also diagnosed with adenomyosis and endometriosis. Wasn't taken seriously for years as I have four children and also the fact that my periods while excruciatingly painful , were very light. Had various investigative surgeries, was put on Decapeptyl and hrt for six months which they said was to "rest my womb". They tried to push a coil on me several times but I refused it. They put me on cerazette contraceptive pill which has been life changing for me . I'm 40 now but they say I'm still too young for a hysterectomy. At my latest appointment they said to stay on the cerazette until menopause

Hi Everyone

I had my surgery on the 13th. It was approx 4 hours long and exceptionally difficult according to the surgeon. My uterus was abnormally enlarged at 300g+

Surgery was conducted differently than I'd been advised - seemingly in line with possible cancer protocol / unsure - but my uterus was wrenched out vaginally and I was injured, grazed, torn, and have perineal stitches. I've had no explanation. Everything's been sent for biopsy. The pain was horrific.

Post surgical hospital treatment was barbaric due to frankly sickeningly and dangerously low standards of nursing 'care'. I'm lucky to be alive due to errors and neglect. I don't know how any medical professional can work with the NHS in the shoddy state its in.

I should have been put on a gynae recovery ward for at least 5 or 6 days as I was in crisis but was booted out on day 4 despite the state I was in. Came home in a mess and have spent my time wondering if I need to call 111 / ambulance until yesterday when I started to feel a bit better.

Unfortunately for me, the chronic abdominal pain is not resolved and is far far worse so I will now need investigation into colo-rectal issues. However, I did need radical hysterectomy due to multitude of issues including suspected ovarian cancer. So at least these body parts are out of the way now.

My surgeon said the surgery was exceptionally difficult due to the enlarged size of my uterus and that it was also extremely urgent / an emergency and should have been done sooner. As such I would urge any of you to press hard for surgery and take private consultations if necessary to refer you for a fast pathway. It is unacceptable that I've lost 6 years of my life to the NHS playing stupid games when they knew I needed a hysterectomy all that time ago - I've been through hell in all of this and I'm still not well as it had gone too far and have been bodily injured by the surgery itself which was seemingly a violent affair by all accounts.

Welcome to the group. I'm glad that the pill has helped you 😊 x

I am so sad and sorry to hear what a terrible time you have had. You must be traumatised by it all.
Have you considered complaining to pals?
I am awaiting a hysterectomy but have been told 12 to 18 month wait x

I hope you all had a lovely Christmas and Happy New Year. How has everyone been? I've been in quite a lot of pain and started Amitriptyline but the insomnia has been brutal, so I think I am going to stop. I'm gutted as I was hoping it would help the leg pains 😞 Why does all of the medication have such awful side effects xx

I've been lurking for a while but desperate for any tips or advice. I'm nearly 30 but had utterly awful periods since a teenager. I've been flooding maternity pads, vomitting from the pain, huge clots and periods lasting up to 10 days.
I was on the combined pill as a teenager but due to migraines I was told no more. I was then on cerazette before I had kids but it's messed me up so badly with more migraines, IBS and really bad mood swings making me feel like I didn't want to be here so came off it. I now have two beautiful children but my periods are still horrific. I can only describe it as full blown labour pains for days each month. Ive been given mefanamic acid and tranexamic acid but even that's not working anymore. I'm at a complete loss as I can't carry on like this. I still have terrible mood swings and PMS on top of it and just struggle so much each month my husband has to do everything as I'm in too much pain to function and I'm so worried of leaking everywhere.

I've had the coil pushed on me which I've said no way. Far too many horror stories and cerazette which I tried again post kids but it brought back all my previous issues and constant heavy bleeding for over 4 weeks so I stopped. I had a gynaecologist referral and told no hysterectomy or endo ablation for at least another 12-15 years.

Thankyou for sticking with me if you have. Please can anyone suggest anything else? I can't carry on like this. I'm miserable and feel like my period is ruining my life. I have to plan everything around it. I've been taking supplements to try to help me and exercising more and eating as healthy as I can but just getting no where and no help.

I've had endometriosis queried but on internal scan only a small fibroid was found last year and they said I'm basically just to get on with it and suffer no further investigation will be done.

Had no idea this thread existed.

I am 51 in March and have been back and forth to the gynaecologist since 1998 having suffered for decades with gynae and digestive issues (also been under gastroenterology for years).

I had a uterine ablation in 2022 which has failed resulting in post ablation syndrome. So I asked for a MRI scan in November last year to check what is going on (especially as my sister was diagnosed with endo at the age of 44).
The results of the scan are showing diffuse Adenomyosis and deep endometriosis.

My gynae has referred me to the endo team but I found out yesterday it’s a 40 week wait (and that’s just for the initial consultation).

I am so upset it’s taken 20+ years for a diagnosis and I’m still nowhere near to getting it sorted.

Hi, sorry you're going through this hellish experience.

Can you ask your GP to refer you for more in depth scanning to look for endometriosis? Also to get help to get your hormones stable? If you can afford it, I'd pay for a private consultation if necessary and ask them to diagnose you and refer you back to the NHS for recommended treatment.

I've finally had a radical hysterectomy after decades of issues but I'm 53 now and often the NHS doesn't like to do it on younger women in case you want more children. (I have no children, never wanted any, but they would bring this issue up)

One thing that helped lighten my bleeding was daily dose of progesterone 'Provera', I was started on 10mg per day and increased to 30mg then 60mg per day in split dose but that was in the last few months before surgery. I'm not sure it's safe to take long term - you'd need to check.

Taking tranexamic acid at the very first sight of bleeding is really important and take it on the highest dose as close together as possible until the bleeding has stopped. Don't wait until you're in a full flow.

I stopped using tampons and used Tena Lady products as they were the only thing that could take the volume of blood.

For the sake of 'evidence' for your GP and the hospital take photographs of your pads, tampons, and blood clots. That's what I had to do, every single time, so I could evidence what I was saying. This was very annoying - taking my phone to the loo every single time I changed a pad but it had to be done or no-one would believe me.

You don't have to keep suffering but you do need to keep pushing, effectively, to get the right help.

Thankyou so much for your help. I definitely will go back to the GP and ask for more scans. I can see several here have had MRI etc.
Whenever I ask about sorting my hormones they just push the pill on me but I have history of pre eclampsia and very high BP as well as a PE scare that put me in hospital for a week so GPs are very cautious about giving me anything other than tranexamic acid for when I'm actually bleeding. My youngest isn't quite 2yrs old and I bf her so they keep saying my hormones need more time to settle. My periods came back 3 months pp even with exclusively breastfeeding. I do take tranexamic acid soon as I see any blood but it's still so bad.
I've begged for a hysterectomy and been told no I'm too young. I've explained I'm not having more kids as I nearly died having them both with a host of complications and my husband's had a vasectomy but that doesn't seem to help.
I have a feeling private is my only option at the moment but will have to save up for a consultation.
I mainly use tescos thick maternity pads and then the always extra night ones during the day if I pop somewhere.
The pain is so debilitating as I'm sure you know. Mefanamic acid only takes the edge off and ibuprofen and paracetamol don't do anything. I may see if I can do tranexamic acid with the codeine and paracetamol others have do on this thread.

@abbs1

I know that pain very well. I recommend for something a bit stronger, you can get over the counter Boots Codeine (12.8mg) & Paracetamol. That's a high dose of codeine for something with no prescription. It does make you feel a bit drowsy though and I can vouch for the fact that codeine is incredibly addictive.

I would push as hard as you can for a recommendation of a hysterectomy based on your symptoms. But the NHS and in fact any decent gynaecologist is always going to offer non surgical non invasive treatment, not just because they're trying to save money but because anaesthetic and surgery always comes with risks. So they'll offer hormone and 'chemical menopause treatments'.

Do you have adenomyosis? Have they said that your uterus wall and muscle is growing thicker than it should be? If so, you'd ideally need a hysteroscopy to take a biopsy for uterine cancer (ask for this to be done under sedation as it can be exceptionally painful and should be done by a surgical team not just one random gynae IMO). Adenomyosis never gets better it only gets worse so you'd have an argument for a hysterectomy but to keep your ovaries.

I will definitely go get some codeine and paracetamol for my next period. This one is just finishing and it's been another 5 days of horrendousnous and my husband saying I can't live the rest of my life like this. He's very supportive and hates seeing me like this and wants to know why I keep being fobbed off.

I don't know if I have adenomyosis or not. No one has ever told me? I was just told my uterine wall is like 20cm plus thick when the gynaecologist last spoke to me but said theres nothing she can do im too young and discharged me. I also have a retroverted womb not sure how much difference that makes. How do I ask for the hysteroscopy? Can I demand one from the gp because of how long this has been going on? Because I'm young I just keep being told I'm not giving the pill enough time or why don't I want the coil instead of dealing with the actual cause of it.
They're now querying PMDD but that's a whole nother thing where I'm not getting anywhere. I feel so alone and even with going to the Dr in tears over it they're like have you got anxiety or PND and I'm like no I'm fine it's just my periods which are completely ruining my life. I can't even take care of my 2 children properly during my periods as I feel like I'm in labour and flooding pads for nearly a week each month.

Wow I'm sorry the gynae said there's nothing she can do and discharged you. This is the state of the NHS nowadays, they'll do anything to get people off the books.

Can you get a hold of the copies of your scan results (your GP should have them if the hospital hasn't sent them to you) and ask your GP to refer to a different hospital / trust or professional for a second opinion?

I don't know what measurements are normal and what isn't. I'm not a doctor! So do check with people who know what they're talking about. There's the uterus itself can be enlarged / inflamed (which is what I had = adenomyosis) or the lining, endometrium, which can be unusually thick. When either the uterine wall and or lining is too thick it can indicate lots of worrisome things and they should be at the very least doing regular scans and taking uterine biopsy if your measurements are unusual.

Do you have a gynae urgent care / A&E walk in at any of the hospitals near where you live? Because sometimes walking into urgent care when actually in a period and flooding is the only way to get believed.

Hi there, I got diagnosed recently on Ultrasound, my GP rang with the results and added ponston to my prescription. I have pain from ovulation until my periods comes, I am 48 so perimenopausal and my cycling is lengthening. I am on hrt and am wondering should I reduce it. Will make a GPs appointment again but think I will be fobbed off. Will try and get a gynaecological referral, but more worried about oestrogen excess and potential risks.
What is the best resolution, my pain is bad but not as horrible as some have it, would a d and c help?

Hi, I'm still not a doctor -or any kind of medic- but I'll chip in my tuppenceworth (and I could be mistaken)

AFAIK a D&C etc will not help with adenomyosis as it's the actual uterus tissue itself that's inflamed and enlarging, not the uterine lining (endometrium).

Ponston = mefenamic acid which is an anti-inflammatory of the NSAID type. So don't take any other anti-inflammatory with it. It might help you and maybe it even helped me but to no long term useful effect, my adenomyosis was getting worse over time and apparently menopause doesn't 'cure' it. So I was scheduled for hysterectomy. But I need to say I had many other gynae issues including having been severely injured in an earlier procedure. My situation was at crisis point, it was so urgent in fact should have probably qualified as an actual medical emergency if the NHS wasn't in such a state.

It is said that the only real cure for adenomyosis is hysterectomy and I'm not sure how hormones affect it as I had so many issues I'm not sure which one the high dose progesterone was meant to be treating, but that did alleviate my symptoms. A consultant gynaecologist is the best person to comment on this and not your GP (unless they also happen to be a gynaecologist).

If I were you, if your symptoms are severe, and they are definitely attributed to adenomyosis, I'd ask your GP to be referred for full checking looking for also endometriosis both inside and outside the uterus as well as a hysteroscopic uterine biopsy to check for potentially serious issues. Then push for hysterectomy. I would have liked to keep my ovaries but things went too far. If you don't have ovarian issues, you can rightfully keep your ovaries.

Or if you can afford it take any scans you've got and consult with a private gynaecologist and ask for their opinion and recommendation (in writing) to take back to the NHS. This is what I wish I'd done in the beginning regardless of cost. In fact not doing so nearly cost me my life as in the process of crap treatments I could have been killed by serious injury in a botched gynae procedure that should never have even been attempted.

The scan results from an internal scan I had last year said small fibroid but they didn't check the thickness of the lining and was a very quick scan. All of 2-3mins at most so doubt they saw that much. I will see if I can get a second referral somewhere else.
Can I ask what type of scan etc you had to confirm your diagnosis? I want to go in with as much information as I can as I've been to the Dr's like 6 times in last 9 months or so and keep being told think about the coil write down your symptoms give your body more time to settle postpartum etc etc 🤦‍♀️
Unfortunately there's no gynae urgent care only if your pregnant. I was up a and e earlier in the week as I suddenly reacted badly to mefanamic acid and bad horrendous chest pain and my heart beat went all weird (saw on ecg) which was really scary. They fobbed me off with gastritis and sent me home after i questioned it as the notes said i needed to go on a cardiac monitor and then the dr said no i dont im fine so I have no faith in the system.

I feel like if I can't get referred elsewhere I will have to save and see someone privately.

Unfortunately my journey to actual surgery was long, slow, tedious, abusive, harmful and took at least a decade.

That is why I encourage people to push effectively and don't waste time.

I had a huge ovarian cyst at some point that was supposed to be laparoscopy removed but never was but was then referred for regular interval ultrasound and transvaginal scans - once ever 6 months. I was also testing high on CA125 which can be a marker of ovarian cancer.

Long story but at some point after many years during the regular interval scans (by the outsourced scanning company) the tech asked me in some sort of exasperation why the hospital had not already operated on me and given me a hysterectomy. I had multiple large fibroids, a rapid growing polyp, extreme inflammation of the uterine wall, internal scarring, and abnormal thickening of the lining, as well as ovarian cysts coming and going. Turns out nobody was looking at the scans, the hospital had discharged me without my knowledge, and my GP surgery was being copied the scans and I guess 'filing' them, nobody looking at them.

More chaos broke out after I demanded to be referred to a different hospital. I had to wait a LONG time (all through the covid years) and eventually was referred for an urgent hysteroscopy at the UCLH to remove the rapid growing polyp. This was badly botched by someone who wasn't trained or experienced to do so and severely injured me internally, leaving me in an horrific state, bleeding every day and getting repeat infections plus crippling pain.

I went back to the original hospital to demand treatment. I've had to fight every step of the way, that took many months. I've had hundreds of ultrasounds and transvaginal scans over the years, but prior surgery this last year had multiple CT scans, contrast dye CT scans, and various MRIs and contrast dye MRIs (apparently these show 'everything').

So, one failed corrective surgery and another surgery later, I now have had a radical hysterectomy five weeks ago. It was brutal and traumatic. So non-surgical non invasive hormone treatments are definitely a good idea to try. The surgeon said it was exceptionally urgent and should have been done far sooner (insert eternal roll eyes).

I recommend nobody gets in the mess I was in - being failed, being fobbed off, being deliberately discharged without being told, being thwarted and lied to every step of the way. Keep a full grip on your situation, get copies of all your scans and keep pushing for resolution.

Oh my goodness. This is utterly shocking and I'm absolutely fuming you've been through this. That's completely unacceptable and makes me so angry for you. What on earth have the hospital been playing at?
Have you looked into compensation at all?

I will keep fighting. I've booked in to the see my GP again middle of Feb to see what else they are going to do to help me. Can I ask how the CA125 test is done? Is it a standard blood test? I know within myself something is wrong and keep being told your far too young for this that and the other and like but all my friends of similar age aren't having any of this so why am i? My local hospital is unfortunately absolutely crap and have failed me and both my children on numerous occasions on things that were extremely serious that they didn't care about one bit. I'm still now fighting to sort it out but doubt I will get anywhere.
I'm going to see if I can be referred somewhere else.

I hope you're recovery is going well and you're back to full health after the trauma you've been through. Covid has A LOT to answer for and cannot keep being used as an excuse.

Thank you. Yes I'm fuming myself as years of my life have been lost to this madness where there's things I had wanted to do but was too unwell. I have a solicitor on the case but it's not looking too hopeful in terms of a clear course of action.

In my experience, the last few years, all hospitals are crap and the NHS are in a dire state of dysfunction. I'm not hearing anything good from anyone who either works for the NHS or has needed to use them in the last few years. This should be a key political issue IMO for the next election and yet no party will even 'go there'.

Yes, do keep pushing. CA125 is just a regular blood test, it can be ordered by a GP, it can indicate high levels of inflammation (such as caused by endometriosis) and also is a marker for ovarian cancer -but- do please note that a high reading doesn't mean you definitely have cancer. Also, if you're losing a lot of blood please get your blood iron store level checked which is 'serum ferritin' and doesn't get included in routine bloods. Make sure to get plenty of Vitamin D3 too.

Unfortunately, GPs refusing tests or referrals can be a whole nother ball game. One thing that you can do is research on your symptoms and read up the recommended action / treatments on all the 'official' websites such as NICE guidelines, NHS advice and guidance pages, the Royal College of Gynaecologists website, individual hospital websites etc because it can give a lot of clues as to what 'best practice' and your right to treatment pathways are, then you can make direct requests and ask questions that they can't so easily avoid. Also, I have literally been to A&E with flooding bleeding and they can't turn you away even if the gynae urgent care says pre-natal emergencies only or whatever.

Keep fighting!

Just diagnosed after an internal ultrasound. Right side pain before period & break through heavy fresh bleeding.

I don't know if I have adenomyosis or not. No one has ever told me? I was just told my uterine wall is like 20cm plus thick when the gynaecologist last spoke to me but said theres nothing she can do im too young and discharged me. I also have a retroverted womb not sure how much difference that makes.

My diagnosis came after I complained to my GP of bloating and pain post period and flooding. They didn’t mess around. I had an ultrasound scan and then a hysteroscopy under GA where they removed and biopsied a couple of polyps (I also have a retroverted uterus and can barely tolerate a smear test so GA necessary). They also did a MRI scan and diagnosed adenomyosis at that point.

I’m amazed at how some of you have been treated I feel like my treatment, although stressful, was pretty seamless. My symptoms (pain and bleeding) are controlled reasonably well by taking the mini pill. I still suffer from bloating most days but it’s generally evenings so I arrange most of my activities during the day time and keep myself to myself during the evenings. Menopause will probably come in the next couple of years so will be interesting to see what joys that brings!

I’d really like to encourage women to kick up a stink! Don’t tolerate this poor care. Don’t let them make you feel that you’re making a fuss.

We have a gynae A&E at our local Women’s hospital. They say that you should come if you are flooding through more than one super plus tampon/towel PER HOUR. I’m sure there are lots of women here who manage only 15 minutes between changes. But it proves that it’s important - if you’re flooding you need immediate medical help. Don’t let your GPs fob you off.

Hi , I had a phone call with the gynaecologist yesterday, I was diagnosed with ademyonosis via ultrasound last year . I was put on the mini pill last September, to deal with bleeding . It’s stopped the horrific periods , but I’m having to deal with a lot of spotting . I was offered hrt or a coil , neither of which I want . I’m 50 , so I just hope menopause comes soon , sorry for the moan.

Hello lovelies. Just a little update from me. After everything, I have been misdiagnosed 🥺 I actually have Fibroids, multiple, missed on laparoscopy!!! I'm having a hysterectomy next week.
I can't believe how gaslighted and not believed I have been. After an mri, they don't believe now that it is Adenomyosis.
Please carry on with the group. Wishing you all the very best in your journey xx

12 days until my consultant appointment
Got a be you period patch on which is helping