Adenomyosis/Fibroids - which treatment?: So an update... - NRAS

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Adenomyosis/Fibroids - which treatment?

So an update following on from my recent Haemoglobin levels crashing and resulting in a blood transfusion...

...Well at 56 and surely close to the menopause I think six years of struggling with horrendous periods is long enough. It seems I have Adenomyosis and two 3cm fibroids.

So, I have been given five options and sent home to think about them, but how the hell am I supposed to work out which is the least invasive but most effective for me. The list is:

Mirena coil - not often successful with Adenomyosis, plus don't fancy it either, so could end up back to square one and another choice to be made.

Uterine Fibroid Embolization - a while to heal plus bleeding may continue for months if not a year as the fibroids break down and are naturally passed, plus it may not work so back to square one and another decision.

Ablation - burning (ouch) the womb and if any slight chance of a nasty in there it can make it very very difficult or very late to diagnose, plus if the womb or cervix or something is long there probe may not reach and therefore unsuccessful.

Lapascopic Hysterectomy - through the tummy then pull out through the vagina, weeks and weeks to heal, but bleeding stops and menopause immediately. Risks of damage to bowel and other organs or even risk of a colostomy.

Regular hysterectomy - through the vagina and very similar to above.

I'm still on Methyprogesterone but being told it is a risk being on it and need to come off asap, which of course I can't as I will haemmorhage. I need to make a decision on the above asap but after months I am no further forward.

Help!

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In your account you have mainly looked at the problems with all the solutions - this may be because this is how they were presented to you?

And there is no sense of how likely any of those adverse effects would be.

If they haven't given you any sense of how often the worst effects are you need to find out: e.g. the risk of having "Risks of damage to bowel and other organs or even risk of a colostomy." are I think very, very, small in a laparoscopic or vaginal hysterectomy. Also will they remove your ovaries? They don't always and if not then you would have a menopause usually at around the same time as usual.

You might want to draw up a big sheet of paper (or a table on the computer) and do an advantages on one side and disadvantages on the other side. That would prompt you to find out more if you need to and also help with the decision making.

I'm biased because having a (vaginal) hysterectomy for heavy (and I do mean heavy!) bleeding was one the best things I ever did. I went back to work a bit too quickly (after eight weeks) when I was still feeling very fatigued, so if you can take as long as you are able.

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Thanks oldtimer, good advice.

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I personally would Not have the Mirena coil, it's great for heavy periods as it has a hormone in it, But for Adenomyosis No!

I had very, very heavy periods and horrendous pain. I had undiagnosed Adenomyosis, I was fitted with the Mirena coil, omg I passed out on the table the pain was horrendous. I begged after 6 weeks to have it removed.

Adenomyosis is where the cells from you uterus lining go into the uterus wall into the muscle. The difference with Endometriosis is the cells of the lining go into the body cavity. In each case every month you have your period these cells bleed no matter where they are like a normal period.

So having a Mirena coil fitted that embeds into your uterus wall and having Andenomyosis to me seems wrong, in my case it was.

I suffered 10 years, my fault I let it drag on. When I was offered a hysterectomy I jumped at the chance. Best thing I ever had done. I was 41.

I agree you should sit down with some paper and write the pros and cons of each procedure down which is good for YOU. Good luck with it my lovely, be thinking of you. X Rie

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I forgot to add my Adenomyosis was only diagnosed post hysterectomy.

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As often is the case Riedenise, whether mind is a calculated guess or it showed up on the CT scan I am not sure, it was only after every other scan that I pushed for CT and they diagnosed Adenomyosis. I need to get off the Progesterone but I can't stop bleeding if I do, apparently for months is tops for this tablet and ideally not every day like me.

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Riedenise, thank you so much for your reply, I am hanging onto to every nugget of information and piece of advice. What kind of hysterectomy did you have and how long before you could walk a mile comfortably, work etc?

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I had a bikini cut hysterectomy with ovaries left. Probably because I was only 41. I went into the menopause aged 54. I was off work 3 months.

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All the options will have pro's and con's and it's very much your choice. I always had problems, from puberty, and was told a hysterectomy would be my best option at 29. I tried any number of treatments, none of which helped much so, at 39, I'd had enough and had a traditional hysterectomy but they left the ovaries. I felt better almost straight away and was back to a busy life after six to eight weeks. Unfortunately, my ovaries didn't like being messed about and the surgery triggered menopause which meant HRT for the next 14 years and it suited me very well. It's a lousy, rotten, miserable condition you have and I wish you all the very best whatever you decide to do.

Big hugs

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I had the same diagnosis, but this was not discovered until the doctor performed my surgery. I had a supracervical hysterectomy, so I was able to keep my cervix which helps to prevent prolapse of the bladder in the future. I also retained one ovary, so menopause was not immediate. Best thing I ever did!

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Hi Juneann, I had very heavy periods for many years. I had adenomyosis and refused the mirena because progesterone has always been terrible for me. Causes horrible mood swings, depression and weight gain. I then had an ablation. I really think this is your obvious next step. Its a very simple procedure, a day procudure, no hospital stay required. You only need to be sedated, no anesthetic. You're home in a few hours, and mostly the worst you experience is some period like cramping. Which after years of painful periods was nothing to me. After my ablation I still had bleeding, but much, much lighter. More like a normal periods, which again, for me was bliss. Unfortunately after about a year, the bleeding started returning, getting steadily heavier and heavier. I would have happily had another ablation, because it really is a very simple thing. But I also had a suspicious ovarian cyst that required biopsy and I had precancerous cervical cells, so I then decided to have a total hysterectomy and oophorectomy and be done with all of it. Depsite having horrendous complications (post op bleed, almost killed me, required transfusions to save my life) the hysterectomy itself was Ok. The first two days were very painful, but I was walking, driving and living a normal life again at about 4 weeks. I had an open hysterecomy, bikini line, which has a longer recovery time than laporoscopic or vaginal. It was a big surgery, but it solved a lot of problems. Don't regret the hyster for a moment (just my choice of surgeon who didn't pick up my post-op complications). But in your shoes, I'd try the ablation, purely for its simplicity. It might get you a year or two of light periods, past menopause, and negate the need for a big surgery. My docs over here (Australia) wouldn't even consider a hysterecomy for heavy bleeding without having first tried an ablation. Anyway, this is just my experience, all the best with your decision, whichever option you choose, I hope it all goes well for you.

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Hi lilyak that's a great help thanks. I'm now not sure that ablation is an option as I have two 3cm fibroids, so may be two big for ablation but embolization could prove a better option before considering a hysterectomy.

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I was 35 when I had a hysterectomy best thing I ever had. I was unusual though as I had a cancerous bowel tumour at the same time (very rare one) so as I had to have a colostomy because they couldn’t remove all the tumour without. I had serious problems with my periods too with fibroids etc so they decided as I would have to go back at some point for a hysterectomy to do it at the same time. They left my ovaries in which lasted about 3 years before menopause set in. If you have a hysterectomy though you don’t need progesterone but can have eostrogen only HRT if required. If you ask me get rid of your uterus sounds like it’s not any use to you and all those heavy periods won’t help with your blood loss issues with anaemia etc etc. Don’t look at what might happen with extremely rare odds like bowel tears etc the chances of that happening aren’t worth thinking about. Look forward to a better life without pain and blood loss etc. They’re my thoughts anyway. Xx

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It's the recovery that gets me. Over the last two or three years I've been laid up a lot with a prolapsed disc, trapped sciatic nerve, flooding, anaemia, being whizzed into hospital for a blood transfusion, plus regular eight hourly infusions for RA. I need normality.

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