Endometriosis and adenomyosis - anyone have any experience of these issues?

[WendysWindyHouse]

I’m 51. After decades of various gynae issues including periods so heavy I would flood and ended up needing iron infusions I decided in 2022 to opt for a uterine ablation.

I was assured by my gynae that any complications including post ablation failure were extremely rare so on his advice I went ahead. The op went well but at first I was experiencing fairly heavy periods still. My gynae said this was common and it should settle down after 6 months. He was correct on that front because as soon as the 6 month post ablation period arrived them became very light. I was so happy.

However, that was short lived because each subsequent period after that, although super light (spotting really) is so painful it’s indescribable. The pain radiates from my uterus right up through to my stomach area (I also have IBS and it has greatly exacerbated my gut issues). The pain starts around 3 days before the spotting begins and around 4 or 5 days during and after. I’ve even started taking codeine as the pain is so dreadful (and I have quite a high pain threshold). I have always had super painful ovulation also and am finding mid cycle pain is getting worse since the ablation.

Went back to gynae end of last year and he nonchalantly mentioned that I have developed Post Ablation Failure (after assuring me pre op that I would be highly unlikely to get this).

He wanted to discharge me with the simple advice to just take pain relief during these painful periods but I pushed for a mri. Turns out that I have deep endometriosis and diffuse adenomyosis. Because of this he has referred me to the endo team. I saw an endo gynae a couple of weeks ago who explained to me that the ablation has caused the adenyomyosis and it was a procedure I should not have had done as I have endo. It’s basically allowed the endo to grow into the walls of my uterus.

I am left now with the same advice to take painkillers during my periods and have been put on a year wait for a laparoscopy to find out what’s going on with the endometriosis.

Unlike many women my age I am longing for my periods to end but it seems there is no sign of this atm, my cycle is getting shorter so I am experiencing these awful periods more frequently now. The gynae has recommended the mini pill which I do need to take but tbh am very apprehensive as I’ve always wanted to avoid synthetic hormones, hence the reason I opted for the ablation. Also, my mum has just been diagnosed with breast cancer and this worries me because the first thing on the leaflet says the mini pill can increase the risk, I know it’s a small risk but as we are only just going through this with my mum I find it frightening tbh.

I feel really low with all this pain and discomfort and knowing nothing will be done about it yet due to the long NHS waiting lists.

If you suffer from any of these issues, what has helped?

Sending love.

I have both deep endo and adenomyosis. I'm 39 and TTC so for different reasons hormones are not possible. I've previously had surgery to remove endo (worked because I got pregnant and the result is currently leaning on me eating toast) but basically the pain and period problems are dreadful (worse since birth).

In terms of management - I take a lot of painkillers and not just limited to period times. I work and have a toddler so for me it's necessary to have a functional and livable life.

I know others have found relief with things like yoga (not for me), bathing in Epsom salts and magnesium supplements. I did also start to take some endo supplement tablets from wild nutrition - which are meant to bolster vitamins that might be lacking.

You have my sympathy and solidarity. It's utter shit. Do you think you'd want a hysterectomy? (Altho that's no guarantee of helping the endo as endo lives outside the uterus).

Thank you notagainnotnow and I’m so sorry you are experiencing these awful conditions too, I don’t think people realise just how physically and emotionally painful and draining they are.

I totally understand when you say you have to be able to live well with this in order to have a functional life. I was the same when my dc were little (took me ages to conceive them), you just want to be on top form for them, don’t you? Now I’m older I care for my mum who has dementia and cancer. Life gets in the way but doing it with pain is so much harder isn’t it?

I would love a hysterectomy but the gynae didn’t seem keen, he was not selling it at all, telling me all the horror stories and all the complications etc. Think he just wants me to limp by with medication until menopause but then said he has many ladies in their 60’s and beyond still struggling with endo so I don’t know what to do, it’s mind boggling tbh.

I have tried many ‘alternative’ remedies also but haven’t had much luck. Just spent a fortune on acupuncture with no real benefits. I will definitely look into the supplements though, I also have awful gut issues so need to go on a gut healing journey as well, argh deep joy!

Good luck with your journey and I hope things go well for you.

oh that's horrible I'm so sorry - and especially with caring responsibilities. Can I ask how long did it take you conceive? it took 3 years for the firstv (that was with surgery). And my great age plus endo etc means that a second is v unlikely.

They are both definitely full body diseases. I think - even with increased awareness now - the assumption is it's bad period pain / heavy periods. Which, if it was only that and could be managed by OTC painkillers then SIGN ME UP.

But no. It's all around the month for me with different symptoms, gastro symptoms, migraines, nausea, obviously pain, fatigue is beyond belief and then the challenges of managing flooding / bleeding while at work with a toddler. I've had many awkward wrapping jumpers round my waist moments or having to sprint off in the middle of teaching. Sorry rant over!

Can't believe you aren't being considered for hysterectomy. Obviously up to you, but I think you could rightly seek a second opinion and push for it. By comparison - I have been offered a hysterectomy (!) at 39 and medical menopause. So i do think it depends on who you see. Yes of course there are complications (what isnt) but living with two chronic conditions isn't 'uncomplicated'.

what pain relief do you have? Have you tried stuff to reduce bleeding like tranaxamic acid (spelling probably off there) or any other NSAIDs?

This suggestion might make you want to get in the bin, but i have genuinely found that exercise has helped - certainly with my mood and also in distracting from pain. It has also made me feel like I have some agency over my body and I'm not just a victim of illness.

notagainnotnow it took 6 years to conceive my first dc and tbh, after endless tests (they never did pick up the endo, even back then) I had actually resigned myself to the fact I’d never have children but I fell pregnant after several reflexology sessions. It was probably a complete fluke but I have had a fondness of reflexology ever since!

But no. It's all around the month for me with different symptoms, gastro symptoms, migraines, nausea, obviously pain, fatigue is beyond belief and then the challenges of managing flooding / bleeding while at work with a toddler. I've had many awkward wrapping jumpers round my waist moments or having to sprint off in the middle of teaching. Sorry rant over!

Oh goodness I can totally relate to all of that. I’ve stood in the street chatting to people whilst feeling the bloody running down my legs (one of the reasons why I have always worn black leggings!). I’ve flooded onto peoples chairs in their homes and on my cream leather car seat more than once - just dreadful.

I agree, it is most definitely a whole body disease and I am pretty certain most of my decades of health woes are related, I have felt pants for so long that I no longer remember what it feels like to feel alive and full of vitality. I just wish most conventional doctors would look at us holistically.

I honestly know longer know what to think or believe from doctors anymore. Saw a private endo specialist in January who was all for a hysterectomy but I just can’t afford the £10k price tag which comes with it, so saw my assigned NHS endo specialist two weeks ago (not overly keen on him if I’m honest), he just advised me to take the mini pill or have Zoladex injection. He appeared to go out of his way to put me off having a hysterectomy citing all the possible complications from the op and after. Yet both this NHS gynae and the one I saw privately are colleagues who work together in the same department of the same NHS hospital.

I used to take tranexamic acid before the ablation but can’t take that now I hardly bleed during my period since the procedure. Weirdly, even though the endo was (apparently) there for decades I never actually suffered from period pains, my pain always came mid cycle, during ovulation, the pain would be so bad it would hurt to sit (but every gynae I saw said this was a normal thing for some women). Now that I’m in ablation failure the pain is still mid cycle but also during the light bleed but it’s horrible pain, labour type pain. They’ve actually offered no pain relief. I’m to start with the mini pill, they say this ‘may’ help.

I do a lot of exercise. I walk my dog for over an hour each day and I also walk a friends dog several times a week and I do some yoga. I’d probably be a lot worse not doing those things.

I have both those, and pain symptoms like that.

It’s basically my normal so I rage about it once a month and then forget, in the manner of childbirth, until next month.

I read a thing on here recently about a woman who had never taken painkillers and was genuinely agog because I just assume everyone is double dosing paracetamol and ibuprofen for a week of the month. Apparently not.

Oh hey @LividAA sending solidarity.

That's mad. My MiL once said rather off hand - oh I never really had any period pain. I nearly fell off my chair. I am so hyper aware of my uterus and everything associated at all times. I cannot really imagine what ' no pain' would feel like.

At the age of 27 my daughter had a hysterectomy, she quite simply had had enough. She had no life and had approximately 1 week a month without bleeding.

She’s had endometriosis removed several times, but was also born with half a uterus. The other half had formed into what they called a rudimentary horn, so from the start of her periods this bled constantly into her pelvic cavity and she was in constant pain for many years, in fact it ruined her teenage years and seriously affected schooling.

She feels so much better and free from constant pain and bleeding. We had to fight for the hysterectomy and change surgeons, her original gynaecologist was hell bent on preserving her half a knackered uterus simply because she hadn’t had children. We were banging our heads against the wall explaining to him that she had no life, and couldn’t look after her dogs never mind a baby.

She has no regrets and no longer has the dreaded downtime that the constant bleeding caused. She’s kept her ovaries so doesn’t need HRT.

Terrible that we have to live like that though. My poor mum lived most her life on painkillers.

Your poor dd.
So glad to hear the hysterectomy has turned her life around though.

I would love to rid myself of my uterus tbh especially now it’s riddled with adenomyosis, it serves me no purpose only hinders my life.

The NHS gynae went out of his way to put me off the op, basically made it out to be a hugely risky procedure. Trying to work out if it genuinely is that risky (I know lots of women who have had hysterectomies and every single one has said it was the best decision for them) or that he’s trying o save the NHS some money?

I've got both and the mini pill has been excellent. I just don't have periods. So the pain I had each month (I think due to my ovaries being adhered to my uterus) has gone. I've been given a double dose of the mini pill, as a single dose wasn't enough.

Not sure that this is helpful, given your own circumstances.

@WendysWindyHouse I think it's probably about rationing services and individual consultants having a specific view on operations . (Unless of course there might be specific health reasons that a hysterectomy for you would be risky but I'm sure you would have said). Eg I recently had an operation to fix an incisional hernia - all the GPs I saw dissuaded me from having it , talking about risks, saying it wouldn't be covered on NhS. I had the op on the NHS, low risk, all fine...basically because I pushed it.

So...Honestly, I'd suggest going back to that endo team and requesting to see the consultant you saw privately but on the nhs. You're allowed / have the right to ask for a different or second opinion. Or you could request to be referred to another hospital local to you (eg I live in a city and there are two major hospitals both with endo teams).

I do think that I need to at least try the mini pill. I was just apprehensive because of my mums recent bc diagnosis and the fact that when I do bleed it’s agony because of the ablation failure and I’ve read so many saying it made them bleed sporadically for months, I do want to avoid bleeding completely. So maybe I do need a double dose? I’ll have to find out.

Yes, I can’t quite understand his reasons for putting me off a hysterectomy. I have a low bmi, no clot risks, lung issues etc.

The gynae I saw privately is other most requested endo specialist in our area. I have seen endless gynaes over the years and he was by far the most knowledgeable and understanding gynae I’ve ever met. Sadly, that has made his waiting list so very long on the NHS.

I’m just praying for a lottery win!

I had both conditions. Horrendous pain, flooding periods and bleeding between periods.

At 45 it became worse than ever. The pill no longer controlled it and I was passing huge clots every month, was anaemic and often ending up in A&E.

I had no quality of life and it was affecting my work. Once I even ended up collapsed in a corridor in the office while the receptionist rushed to call an ambulance once...

A scan also showed the Adeno had caused a big ball of tissue the size of a golf ball to develop at the top of my womb and it was pressing on other organs.

The gynaecologist I was referred to first made me try hormones & tranexamic acid, then mirena coil (I could not tolerate it) and then suggested an ablation.

Big mistake as the ablation does not do anything to control adenomyosis and I ended having really bad pains as well.

That gynaecologist tried to discharge me at that stage saying that I should just wait for things to eventually improve.

I just had enough and I made a complaint to the hospital and ask for a different consultant.

The new consultant saw me quickly and said that I needed a partial hysterectomy and that the ablation had been a waste of time and should not have been performed.

My GP was supportive throughout and called/wrote to the hospital to tell them my condition was getting worse to help speed things up.

The partial hysterectomy gave me my life back and I have had no issues since linked to this op (it has been 8 years).

hi WendysWindyHouse,

In the end we sought to go privately., I did lots of research and found a consultant that wasn’t connected to her current surgeons hospital, we’d had problems in that anyone working at his hospital daren’t go against his opinion, he was the head of gynae.

Her surgeon listened to her and was absolutely lovely. He decided that he couldn’t let us pay £9000 for a hysterectomy and that he would put her on his list at his NHS hospital, I could have wept, just because he’d agreed to do it.

It baffles me why a gynaecologist, usually male, plays god in telling women what they can and can’t do with THEIR OWN UTERUS!! and don’t seem to believe how much pain you’re in, it’s completely unacceptable.

Her operation went like a dream, all endoscopic and very neat. She was up and about the very next day. All operations have an element of risk, but to deny someone that has one of these horrendous debilitating gynaecological conditions is criminal.

I wish that I had never had my ablation. My endo gynae has confirmed that it has caused my adenomyosis, I’m so very annoyed about that.

It looks like I am going to have to push for a hysterectomy. It’s all very well my gynaecologist trying to put me off with talk of all the possible things which could go wrong but things are wrong now. I now have a buggered up uterus which is full of scar tissue because of the ablation with the walls of my uterus full of endo. I don’t think I wish to live with something like that residing inside of me, I worry it could eventually become diseased.

I would absolutely love to find a gynaecologist like that.

Tbh, I have had a gut load of male gynaes telling me what is best for my body and not fully listening to me.
Before I went for my ablation I did my research and sent the gynae a list of 20 questions that were important to me. This was during Covid times so I couldn’t get to see him face to face for a consultation.

On the day of the op, he looked at my name, turned to his nurse and said ‘Oh, this is the lady I was telling you about, the one who asked soooo many questions hahaha!’ Yes, questions about my own body, you know, the one I’ve lived in all my life? And the one I’ll have to still live in if things go wrong!