What is the treatment for adenomyosis?

[Worzel]

Hi, hope everyone is as well as they can be. I've had endo and had a lump removed back in March, however my symptoms - leg/hip pain, sciatic pain, bloating, bruising type pain, sharp stabbing pains in my abdomen have got worse since then. I had a lap last Saturday and had a couple of adhesions 'freed' however the surgeon has told me that he thinks I have adenomyosis and will discuss treatment options at my post op appointment. I had my coil changed during the lap to hopefully help symptoms as mine was wearing out. I know that this is often used as treatment. The only things i've read about adeno is that it is the coil, tablets or hysterectomy as treatment options. Has anyone got experience of this? I'm 36 and have been lucky enough to have children and wouldn't be adverse to a hysterectomy if it would get rid of my symptoms as I am in so much pain and it is making me feel so unwell. I feel like an old woman when my legs are affected so much and I have started having problems/pain with sex and bladder problems. Do you think a hysterectomy is an option for someone my age? Thanks in advance! X

[Impatient]

Yes it is an option and a cure for adeno, but you will probably only lose the uterus itself (cut that out and you remove the adeno) much like you would have endo cut out too from wherever it can be cut out. What you don't want to lose are the ovaries, or rather I should say you need to keep at least one working to provide your body with hormones it still needs to protect the main trunk bones (spine, pelvis, ribs and skull) and also super important to protect the heart.

So having the uterus out does not mean losing the ovaries too.

However if your surgeon does decide to take them out as well, then you would certainly need to have HRT for many years at least till you are around 50 in order to add back some of the much needed hormones for your old age health.

I don't have adeno, but there is a fab website for all things adeno.

adenomyosisadviceassociatio...

So much to read up on there and excellent advice too.

As a "very delighted with the Mirena" user from a periods control point of view, it is certainly worth trying, but is not a quick fix like hysterectomy could be.

Mirena takes approx 5 months to get working to radically reduce perhaps even stop your periods all together, and can last up to 5 years with no periods. Very liberating indeed to find yourself in that position without th complications of menopause.

WHich having had the GnRH drugs or 4 months without HRT, I have been through menopause already and am back to relying now just on the mirena to keep the periods in check and occasional pain killers as and when required.

The mirena does increase the risk of getting ovarian cysts and I am on my 2nd cyst with the mirena in, in 2 years, and had 3 cysts prior to the mirena being in.

If you are prone to cysts anyway then it can make that slightly worse, but it is worth it to be free of monthly hell to be perfectly honest with you.

As far as adeno is concerned the hysterectomy is certainly an option, but sex pain is not necessarily going to be solved by having a hsysterctomy. Sex pain is not likely to be adeno related and is much more likely to be caused by adhesions which may in turn have been caused by the heavy bleeding from having adeno, but adhesions don't disappear with hysterectomy and surgery can encourage more of them.

Finding a cure for painful sex is a tricky one. Sometimes surgery can help, sometimes it can make things worse.

Here's he link to a recent article in the daily mail

dailymail.co.uk/health/arti...

(please read the comments section too from Mr Trehan endo surgeon).

All in all, if I were you, and now I know how effective the mirena can be, that is the one to try 1st. If after a year it hasn't dramatically improved things then you can always fall back on the hysterectomy option, but mean time it is worth trying and if it does work then that should tied you over for a few more years avoiding surgery and possible HRT.

Though again Mirena does not rsolve the sex pain issue.

[Dear86]

Hello there

I have moderate to sever endo with adhesions, cysts, adeno and severe sciatica.

Previous to diagnosis, I had the copper coil for contraception and I had sciatica to my foot that drove me to tears everyday - painful sex was an issue too.

I kept asking if the coil was contributing to my pain and was told categorically no it couldn't be the case.

I eventually made an executive decision to have it removed. Within hours my pain and sciatica had reduced by around 50 per cent.

Following endo diagnosis I was told the copper coil has an inflammatory affect in the womb and causes pain.

The mirena hormone coil is supposed to help reduce adeno and inflammation over time but my advice is this: ask about other hormonal treatments such as norithisterone progesterone pill which will over time tackle the adeno inflammation and stop your cycles but also mean you can get rid of the coil and see if that helps.

In my experience sometimes you have to take an active role in your treatment process and trial and error to see where the beneficial options for you are.

Wish you all the best xx

[Worzel]

Thanks ever so much for all your advice both of you, I really appreciate it. I have had the coil before - this was to replace my old one as i'd had it for 5 years. However when I first had it fitted the bleeding stopped for about 3-4 months and then I always had periods again - although they were light and only lasted a few days.

Thanks for the advice re being able to keep ovaries that is really helpful.

Hope you're both well x