I've just had a second ultrasound since my last surgery in January where I opted to have all of my endo, fibroids, cysts removed but not have a hysterectomy. The pain I was struggling with hasn't gone away, so I'm more and more convinced that it's the adenomyosis causing it. When I had my ultrasound, I was told that my uterus is quite enlarged, which probably also explains why I always look like I'm a few months pregnant. I hold my core in tight so it's not obvious when I'm out and about, but that causes more pain as I now struggle to really relax my pelvic muscles.
I'm always on the lookout for something different to try. I've been put on pregabalin a few weeks ago, and sometimes that helps, but not most of the time. I'm on 125mg and will be on the maximum dose they will prescribe of 150 mg at the weekend, so I'm not convinced it's going to do enough.
I saw someone on insta mention uterine artery embolisation, which I've never heard of, so did a bit of research. There's NICE guidance from 2013 on using it to treat adenomyosis, which made me think it's something I'd like to explore further so plan to talk to my consultant about it. I just wondered if anyone has ever been offered / had this to treat their adeno and whether it was helpful? I'm still holding back on the hysterectomy. There's no practical reason for this - I'm 45, no kids for various reasons, and although I'd have liked them it's not going to happen, but I'm just not ready to have it all whipped out.
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GreenViolin
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Hey, I just wanted to ask a couple of questions re. Your ongoing pain if that’s ok.
I had surgery 1st August, deep infiltrating endo removed from pelvic walls, ligaments and detaching of ovary from uterus/pelvic wall. I unfortunately also have adenomyosis but went into surgery thinking the excision would solve problems. It has not.
Are you taking any hormone treatment?
I’ve been on the combined pill to stop my ovulation on a tri cycle basis, the first four weeks after the bleed break are ok. But then for the next eight weeks I have permanent bloating and pressure in my abdomen, constant lower back pain and sporadic flares where pain isn’t touched by cocodamol/naproxen (which used to work quite well). I’m also lightly bleeding every day. It’s like I can feel my uterus if that makes sense. Would you say symptoms sound similar?
I’m currently waiting for my follow up appointment (had to be referred back as they discharged me) 😔.
Sure. As regards hormone treatments I have a Mirena, which I’ve had for the last 15+ years (not the same one, I have had it replaced a few times 😀). This has stopped my periods which helped me a lot as they were so heavy and long as well as painful. I tried various other hormone treatments when I was younger, all of which made my symptoms worse. I discussed other options with my gynaecologist again last year and we agreed that none of the available options were suitable as a) I have osteopenia and didn’t want anything that could make my bone density worse and b) other options meant my Mirena would have to go and that my periods would more than likely restart.
I have permanent consistent bloating and pain in my pelvis up to my rib cage with flare ups where it gets worse. I don’t take painkillers other than after surgery for a few weeks as I don’t find they really do anything unless super strong. I work for a pharmaceutical company that makes opioids so all of my education from work around the dangers really tends to put me off stronger than anything stronger than over the counter painkillers anyway, but I thought it was worth trying something that targets the nerves with pregabalin.
So yes, I think there are definitely some similarities, but even with the same symptoms we can all respond very differently to the same treatments, which is where medical expertise comes in. Wishing for more research to help us understand better what actually causes the pain that isn’t helped by surgery, rather than putting sticking plaster over the symptoms!
I thought embolization was generally for fibroids. I asked about this but they said it wouldn't work for me- usually works best on one large fibroid. Why don't you try zoladex or prostrap with addback HRT. It will help your adenomyosis and stop the endo pain and shrink fibroids. X
Thanks for your reply. My gynae said I can only try other progesterone therapy if I have my Mirena removed. Not keen to do that as it stops my periods which typically lasted up to a month at a time and were very heavy.
Thanks for the hug! Prostrap isn’t suitable as I have osteopenia and don’t want to make my bone density worse. My gynae would give it to me at a push but doesn’t think it’s the wisest course of action. I’ve broken bones a couple of times in the last few years when technically they shouldn’t have broken, so don’t want my chances of further breakages to get higher.
Hi there,I don't know if this is the same thing but I'm in contact with a clinic for pelvic embolisation which is platinum coils inserted in the veins for pelvic congestion. This is to take away pain for adenomyosis, urine and bowl problems, and will take away IBS symptoms and pain and heaviness in the legs by blocking the pupendal veins and illiac veins. So far they can't give me a yes or no whether they can do the treatment until they have reconfirmed I have pelvic congestion. I had an mri may 2023 that found it. Hopefully they'll be happy to use my mri and then do an ultrasound on my lower pelvic because I can't have their transvaginal scan. I've already asked for this procedure at my last nhs area and she flatly refused saying I had no idea what I was talking about about the only treatment was burning the endo (I laughed at her in my head) nobody is burning my insides. I've switched areas moving house and I have a new appointment in this area. I'll see what they offer me and ask again.i know they have 6 interventional radiologists on their team. If they can't do it I'll be going to this private clinic. I want my life back. I'm 33 using a walking stick. That's where I'm at with it. 😄 sorry for the rant if it is indeed the arteries you are having done.
It sounds like a similar treatment, but I’m not sure it’s quite the same. With embolisation I believe they inject particles rather than coils into the arteries to stop the blood supply to the affected area which hopefully kills off the andenomyosis and/or fibroids.
I hope you get some answers soon. You are right to refuse ablation. If you’re going to have endo removed you want excision (cutting out). It’s worth checking if you are at a BSGE accredited endo centre that actually knows how to treat endo / adeno etc effectively. If not, you can ask to be seen at one.
Hi I'm so sorry to hear that, but no definitely not a good idea, for you eith you're current condition. Hope you're able to get something that will help though, have a peaceful day sending safe hugs x🤗
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