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

[ElizabethC]

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

[Minchoo]

I would just keeping pushing and persevering. It’s your body and your health. I have all three and I know I will want it all out soon as I manage to pop a baby out. If you cannot then I suggest you go private speak to a consultant and then get refereed back to the nhs for your procedure. This may take some time but will be very effective!

[ElizabethC in reply to Minchoo]

This consultant IS private! She seems to have an obsession with the Mirena Coil!

[Minchoo in reply to ElizabethC]

She probably has had the pharma company sell it, her peers are pushing it. So it’s all about the coil, you need to do what’s right for you. If she’s not listening move on. Plenty of doctors who will. She’s not living with a debilitating disease. You are. Sometimes I just don’t understand medical professionals

[ElizabethC in reply to Minchoo]

Thank you Minchoo.

I wish medical professionals would listen and be prepared to think about the impact on the person who is experiencing all the problems.

And yes I will be moving on if I don't get what I want.

I've been getting the flashy light migraines more frequently lately and its co-incided with the sudden increased pain, bloating, swelling. Can't see its not linked. I don't want to have meds for this and meds for that in a bid that it "might" help. I want this stopped so I can have my life back. All last year (and I mean ALL last year) I was battling serious respiratory issues. They are now stabilised and then I get this!

Thanks again. It really helps.

[Kangalou]

I haven’t but I have a colleague who saw a gynae at about your age about painful heavy periods. He asked her what she wanted - she said a hysterectomy and he did it about a month later. I’d stress that this was through BUPA though and not the NHS. She was delighted and says it’s the best thing she ever did. They found endo and adeno when they did the op but she hadn’t been diagnosed before that.

Best of luck. I can understand where you are coming from.

[ElizabethC in reply to Kangalou]

Thanks.This is private. I'm fortunate my husband's work has health insurance and he can add me on. So its moving fairly fast (though not as fast as I'd like).

As I said to Minchoo, this private gynae seems to be obsessed with the Mirena Coil! Starting to wonder if she has shares in it!

[Kangalou in reply to ElizabethC]

Hmm. Maybe you could ask for a second opinion? Does she have any expertise in endo? I hadn’t realised until I joined this forum but it would seem that not all gynaes have a great deal of experience in dealing with this stuff. You can ask your healthcare provider to re-refer you to an endo specialist. I was able to look on the website for my local private hospital (Spire) where each gynae had listed their areas of expertise.

[ElizabethC in reply to Kangalou]

I have that available if she doesn't give me what I want.

I would like an MRI if possible to prove more conclusively (its not perfect I know) if there is adeno or fibroids. Not sure it it can pick up endo though.

Happy to have another ultrasound as this is grown since February. I could literally feel it particularly around my period. However, this gynae wasn't interested in that.

The insurance is good and has access to talk to one of their medical consultants if I need to get further advice.

In meantime I'm doing what I'm trained to do (historian) and researching as much as I can.