Adenomyosis Advice Association

Newbie...Possible Adenomyosis (or Endometriosis or Fibroids)!

Hello,

I'm new here and wondering if there are any who have had a similar situation to me.

I am 43, had severely painful and long and heavy periods in my teens and 20s. Went on Depo Provera in my 30s for 5 years which was amazing. No pain, no period, no migrained. Came off it and still no pain or migraines and the length was now 7 days (was 10 - 12) and the flow was lighter.

In the past 2 years, I've had pressure on bladder increasing etc but didn't think anything of it. Then last December had other symptoms - bloating, distended abdomen and a lot of pain particularly around my period (length and flow are not a problem though). Doctor felt a mass in my lowe abdomen in September and advised it could be a fibroid.

I've had one ultrasound (Feb) when my stomach was a bit bloated but nothing like it is now. Radiographer couldn't clearly see anything as I cannot tolerate a full (or even half) bladder. It was stated it was enlarged and if there are fibroids inside they can't easily be seen. Ovaries are fine.

I saw a gynae yesterday who immediately wittered on about fibroids. I knew the Ultrasound report stated there weren't any.

I clarified it and found she hadn't even read the report! Not a good start.

I gave her my menstrual history and tried to explain current issues. Less interested in current issues.

WITHOUT examining me at all, she switched from fibroid to adenomyosis as quick as lightening. Without explaining what it was she immediately started to discuss options. Or I should say Option in the singular.

She was really pushing the Mirena Coil. She said it would stop the period (ok - nice but the length and flow is NOT a problem). Said it would stop the pain (my research is showing this is not necessarily the case), and would be an effective contraception.

I do not want the coil. Having had a seriously traumatic experience in my 20s from a female GP who pressured me into a smear test and then hurt me (I bled for 3 weeks after that) I have a visceral reaction to the mere thought of having anything or anyone stuffing something inside me like that. I did try to tell her but she wasn't interested in the details and clearly did not take notice of my emphasis that I could not tolerate even a smear test/internal examination.

I am to have another ultrasound (I shall be refusing the internal one this time) to see what there is and if its changed since Feb.

But what I actually want is the uterus out (though ovaries remain). I know the risks etc but the pros seriously outway them as I would have no periods, no pain, no risk of adenomyosis or fibroids and hopefully minimise or even not have endometriosis. It would also be an amazing contraception.

There is a lot of obsession by Doctors, with stuffing foreign bodies inside women's parts. I know its "my choice" but I am already feeling pressured into something I absolutely do not want.

Has anyone here managed to go from hell with adeno or endo or fibroids or all three to hysterectomy without being pushed into the other hell of "try this and wait and see"?

I am fed up with "wait and see" approach which is not evidence based and seems more to do with pushing the latest favourite drug etc without referral to the actual Guinea pig - I mean Patient?

Has anyone been able to push straight to a Hysterectomy? If so, please let me have some pointers on how to push this.

Many thanks

Elizabeth

1 Reply
oldestnewest

Hi Elizabeth,

I'm so sorry to hear you are suffering. It does sound like it could be any of the 3 or all 3! I had all 3 and Adenomyosis can show up on an ultrasound but only internal and it's only ever really confirmed post hysterectomy. mri can pick up all sorts, perhaps you could push for one of those?

I had a hysterectomy without having the coil fitted etc but I had had 7 surgeries and several rounds of various hormones prior to this and my surgeon and I had a good relationship.

That's the key really a good relationship with your doctor. If your gynae is not listening to you opt to see a different one, try one who works privately and then can offer you NHS. You need a skilled surgeon with a bowel/bladder team.

Hope you get some answers, some people like the mirena and it works for them but I think this is less than those who don't!!!

Don't rush into a hysterectomy unless it's absolutely necessary. It isn't a cure and although it can help definitely do your research, again a good doc will know your best options.

Unfortunately we are like Guinea pigs, no real answers and nothing seems to progress in terms of options for us girls.

All the best xx

Reply