Uterine ablation failure - anyone had experience of this? How do you cope with the pain?

[Stonecoldhandswarmheart]

Following on from decades of very heavy periods, recurring uterine polyps which always grew back after removal and very low iron for years I decided to opt for a uterine ablation.

That was back in 2022 when I was 49. I had hoped it would have been the dream option for me, my friend had the procedure a few years before and said it had transformed her life.

I had the procedure in April 22 but each period after was still quite heavy, my gynae explained that it takes a few months for the scarring/healing to take place and to give it at least 6 months. Sure enough in October 22 exactly 6 months post-op that period was virtually nothing. Great, except it wasn't because instead of the usual heavy and flooding periods I ended up in agony and again with each period after. Although I don't bleed I still have a cycle so my uterus is trying to push out blood and it can't as everything is sealed over. Urgh! I wish I had given this more thought at the time but I was so anaemic and drained I couldn't think straight.

I put up with it for a year and eventually went to see the gynae who confirmed a failed ablation and told me to just take pain killers and hopefully I would go into menopause and the cycle would stop. However, I wasn't too happy with that response so asked for a MRI as I wanted to know there wasn't anything else going on in there as the pain is horrendous (the pain goes right through my abdomen and under my ribs and lasts a full week). He agreed and a month later the results came back as deep endometriosis and diffuse adenomyosis. I was not at all surprised as my sister had been diagnosed with endo in her 40's, I had mentioned this to the gynae several times but he never really took any notice.

So I am now almost 53, still having a damn cycle so still in agony every period and under a specialist endo gynae department on a long waiting list for a very dreaded hysterectomy, the very operation I had hoped to avoid hence choosing to have my uterus burnt to a crisp instead!

I have no idea when I will go into menopause, all my friends have been menopausal since their late 40's/early 50's but my dear body likes to burden me with more pain and shite. I have tried HRT which simply made the pain worse. I have also tried endo meds such as Zoledex and Ryeqo which both gave me awful side effects. I have just been left on the waiting list (should be some time this spring) and not sure what to do about the pain relief. I am getting by with hot water bottles and my pelvic tens machine and taking to my bed each period to weep and feel sorry for myself. I do take co-codamol but have to be careful with pain meds as I have IBS and everything upsets my tummy.

Has anyone else been through anything like this? I am wondering about asking about the mini-pill to try to stop my cycle, I am sure if I can stop having a 'period' and end my cycle it would help a lot. But can a woman at almost 53 go on the mini pill? Does anyone know? I suffer from aura migraines so I don't want anything which will trigger those off either.

I recommend asking the GP to try the pill and/ or Mirena coil, which can be amazing with heavy bleeding and pain. You might have to try different pills to find the best one. The Mirena and pill may make the uterus lining thinner, resulting in less bleeding and fewer cramps. It's worth using it as you wait for your surgery and afterwards to slow down the re-growth of lesions, as menopause is not a cure for endometriosis either

If you do get it inserted, take paracetamol and ibuprofen 1h before, and make sure they have lidocaine available to inject into your cervix, and numbing gel to make it as comfortable as possible.

Ask your GP for mefenamic acid and/or naproxen (NSAIDs, which help a lot as they are anti-inflammatories and give pain relief). You can take these 3/4 days before your period and during it, as well as daily or PRN. If you take them with omeprazole or other PPIs to protect your stomach, that should mean it reduces the impact of your IBS.
You can also try tranexamic acid and/or norethisterone (helps reduce heavy bleeding) - you need to start taking it 1/2 days before your period starts so that it can work at its best capacity.

I would also look at other opioids as well, for example, tramadol, or I know people who have oxycodone on PRN at like a 5mg dose. They tend to be stronger and can help a lot more than Co-Codamol. Also, these may have fewer GI/constipation side effects, as they are all different for different people. Personally, with stronger opioids, I have fewer GI side effects, and I do have gastro conditions.

The stages of endometriosis are actually about how it impacts your fertility - so a higher stage has more impact on fertility but not pain. So a person with stage 1 endo could be disabled by it and have severe complications, but a person with stage 4 may not.

Also, if I can ask, where exactly was endometriosis tissue found (which organs) on the MRI, as you may want to discuss surgical options depending on where, and how much was found and exactly where.

If, for example, lots were on the bladder and bowels to make sure sufficient planning is in place for the surgery. Depending on the location, it may affect how much can be excised, from what locations and whether general surg (possibly colorectal sub-speciality) and/or urology, or other surgical specialities need involvement. Otherwise, they may have to remove what they can - then plan another surgery (so you would be waiting longer), where those specialities are.

Also, what medications do you currently take? As for endometriosis and adenomyosis, and for anything else? I know you said you've tried other meds (zoladex and ryeqo). Are you still on them?

What other symptoms do you have? Bowel issues (diarrhoea, constipation, etc?), bladder issues (e.g., urgency, pain or burning), do you have nausea and/or vomiting, back issues, pain with sex or anything else? How severe would you say each of them is?

Do you still have issues with your iron?

The links below have much more detailed and useful information on a variety of treatment options in lots of detail on pros and cons:
• https://www.leedsth.nhs.uk/patients/resources/endometriosis-2/

• https://www.nhs.uk/conditions/adenomyosis/

I don't need to take anything to stem the bleeding, I don't bleed due to the ablation, I am in pain because I still have a cycle and every 'period' means my uterus is trying to push out blood which isn't there. I can't have the Mirena due to the scarirng over my cervix, they wouldn't be able to insert it. I would need further surgery to break away the scar tissue to get the coil in. My gyane does not want to do this and I certainly don't want to go through anything like that.

I have made an appointment to speak with a menopause gynae to ask her about the mini pill. I am hoping this may help for a while until my surgery.

I used to take tranexamic and mefenamic acid due to my bleeding issues but they both buggered up my stomach. I have tried most pain relief and co-codamol is one of the only ones I can tolerate. The rest result in awful side effects. I can't take PPI's either.

Thankfully, my iron and ferritin levels are fine now as I had a series of iron infusions prior to my uterine ablation due ferritin levels falling below 5.

My specialist MRI results show that my adenomyosis is diffuse. The endo is in the pouch of douglas. It has also stuck my left ovary to my uterus and I have nodules on my left adnexa/broad ligament and left ovary. Obviously, we won't know the full extent of the endo until I go into surgery when my gynae will excise it all alongside the hysterectomy.

I suffer daily gut issues but all gastro tests have come back as normal. I have spent years and £££££'s trying to get my gut health better but I now believe it is caused/exacerbated by the gynae issues.

I was the first person in the UK to have an endometrial resection ( now called Ablation in 1989..l featured in two magazines and the local news.
I'd had so many gynae operation and procedures .. a laparotomy which took five hours and two blood transfusions... basically all my organs ..uterus/ tubes/ ovaries/ bowels and bladder were stuck together with endometriosis and adhesions.. which they tried to seperate.. ( l started with PID after contacting gonherea from a drugged gang rape ( another story) .. the resection ( ablation).. l was on a drug called Danol ( Danizol)which was a male hormone.. it was horrific and made my clitoris grow to about 1 and half inches) it was withdrawn from the UK. The endometriosis still on my bowels/ bladder ovaries etc.. l had 11 ovarian cysts removed.. 3 were dermoid and big as grapefruit. I went on the TV programme " The Time and Place " with other women to talk about all this Anna Soubery was the presenter. In the end age 37 ( 30 years ago) l had total hysterectomy.. went onto HRT.. best thing l ever ever did... you really need a total hysterectomy... see someone else.. no one should have to suffer.
Good luck.

I hate that medics instill a feeling of dread into women about having a hysterectomy. Someone needs to tell them that a hysterectomy is a walk in the park compared to what women are enduring every month when they get to the point of being offered the operation. As soon as I came round from the operation, the sense of physical and mental liberation was immense.

Oh my goodness, what a journey you have been on! So good to hear that you managed to find something to give you some relief from it all.

I am dreading going through a hysterectomy but this last week has been simply dreadful. I had my 'period', no bleeding of course due to the ablation but the pain, bloating, nausea and digestive irritation and upset was just too much this time, it seems to be getting worse the last 3 months or so. I definitely need the hysterectomy, I just need to psych myself up for it somehow.

That gives me hope, thank you.