Awaiting hysteroscopy but know outcome will probably mean EMA or Hysterectomy

[Cherryblossomrocks]

Hi all, I’m new here , was just wondering if anyone could tell me their experience of having a hysteroscopy - ie, what happens on the day, what sort of thing they say when they give you your results etc.

Basically I’ve been having problems with periods and bleeding in between periods now for about 18 months ~ maybe even slightly longer, as well as pain during sex. Have also been having really long periods, lasting from anything to 25 days, 45 days etc. Currently on day 128 of my current period

Prior to all of this starting I had no issues, I had had 2 copper coils - both had been in for years (did have one taken out for a while when we tried for a family for a bit, didn’t happen and I became unwell so we made the decision to get it put back in and that was that).

My own GP has been fabulous, checked everything out, suggested first thing would be to have my copper coil removed as that can sometimes be an irritant, had that removed, went to gynae and had a biopsy taken and a colposcopy, everything came back clear.

Gynaecologist did find a small cyst on my right ovary but that was all - said that wouldn’t be responsible for causing all this pain and bleeding.

GP had previously put me on tranexamic acid to try and stop the bleeding, but you can’t take this long term.
Gynaecologist says solution is mirena coil or pill - however I know these aren’t the solution for me as I have tried these both before, and tried the pill again recently to see if that would stop the bleeding, but unfortunately I am really sensitive to hormones and take bad migraines and headaches which I am on medication for anyway, but basically this just made it 100 x worse straight away.

After a couple of appointments gynaecologist has now said referred me to a colleague at a different hospital for a second opinion, but basically said to me that as I am “refusing all other treatment”, which I suppose I technically am but it is refusal for a reason, not just me saying no and not giving it a try, the only option left to me it an Endometrial Microwave Ablation (EMA), where they use heat treatment to destroy the lining of the womb - but that this treatment means you are at high risk if you were to become pregnant afterwards, so he is suggesting sterilisation at the same time.

I am only 36, we don’t have any children, don’t think we want any, think I have just about gotten my head around being happy doing the aunt and uncle bit with hubby then handing them back (we have 2 nieces and a nephew between us).

Tbh, I just want some kind of life back, all of this constant bleeding is draining - been diagnosed with anaemia, and my hubby won’t sleep with me while I’m bleeding which I get but is still a bit rubbish.

This has become a bit of a ramble 🙈, basically any advice or any words of wisdom from anyone would be much appreciated.

My own GP has said that depending on what the other gynaecologist says (hoping to see them by the end of this month, still waiting for app letter), that the likely outcome will be EMA or a hysterectomy to stop bleeding altogether.

Thank you for listening

I cannot help with the hysteroscopy procedure but I would suggest you read the recent threads on this very subject.

What struck me about your post amongst other things was the lack of diagnosis to date apart from anaemia which this heavy bleeding has caused. You need a diagnosis as well as treating the symptoms (which they have not done all that well either). Also you are still bleeding even now which is making you feel crap as well (quite apart from the fact that your DH is not sleeping with you due to this which also adds to feelings of said crapness. I'd be having words with him).

I am glad to read your GP is helpful but it may well be that you may not either need either ablation or a hysterectomy ultimately. The cause of this bleeding needs to be determined.

I presume they are aware of you having pain during sex, have they commented on this?. I thought of endometriosis when you wrote that and this can also cause heavy bleeding to arise. Another possible cause is polyps. The only good thing this first gynae has done is to actually refer you onto another gynae for a second opinion. And I do not think you've actually refused treatment either when you've already tried what has been suggested.

In my experience of daily bleeding the only tablets given to me that ceased it was northisterone which I took three times a day. However, when I ran out of those a few days before surgery was scheduled the bleeding resumed and did not cease even after taking more.

Is there any opportunity for you to see a gynae as a private patient for even an initial consultation?.

Is the hospital you are being referred to actually an accredited BSGE centre too?

www.bsge.org.uk/centre/

Thank you for your response.

The first gynaecologist has diagnosed “dysfunctional uterine bleeding”, which I wasn’t sure if this was an actual diagnosis or not, as I felt it just covered describing the symptoms, however after discussing this with my GP she says this is a diagnosis after you have had exploratory investigations like colposcopy and biopsy (which I have had from this first gynaecologist).

He has said now that this is his diagnosis - the only treatments are hormonal - mirena coil/pill, however as I can’t tolerate hormones he says the only thing left is EMA and sterilisation.

After each of the appointments with him when I have told him pain during sex has persisted he has said “This will stop in time”.

Has referred me for a second opinion (tbh, only because I think my aunt was with me, due to my high anxiety and the fact that I felt he wasn’t taking me seriously). This is with a female gynaecologist at Paisley Royal Alexandra Hospital (RAH)

I had to present at the RAH a few weeks ago as was doubled over, bleeding very heavily and passing large clots, was told at that point that the gynaecologist I am being referred to will see me for a hysteroscopy but unsure of when as limited clinics running now due to covid.

Have been given northisterone tablets but caused headaches/migraines straight away.

Bleeding finally stopped yesterday after I had been taking 4 x 200mg ibuprofen for 4 days (on GPs advice), although she said this was the last thing they could prescribe to try and stop the bleeding.

Slept with my DH yesterday for first time in weeks and pain was there after sex, like before, still there again this morning.

Privately I don’t know, he is studying atm - although if I don’t get seen at hospital soon for second opinion then possibly.

Just don’t want this to become a continuous cycle, started off at 25 day period, then increased to 40 days etc then gradually got longer and longer - that was the longest one at 129 days/just over 4 months.

Just checked the link you included there and the hospital isn’t coming up.

I had one following various attempts to reduce my heavy bleeding due to fibroids. The fibroids were first diagnosed through an ultra-sound on referral from my GP. They also gave me Tranexamic acid (it helps but it makes me feel lousy) and I had a mirena fitted which caused more trouble than it solved and ultimately bled itself out (I also ended up at A&E). I also tried taking the combined pill but that gave me a migraine.
So I ended up at gynae where I had an MRI to review the fibroids and then a hysteroscopy to check the lining of the womb and take a biopsy. I had mine done privately (local NHS had a 26 week wait and that was before Covid!) under general anaesthetic so i can't tell you much about what happens other than I was back in my room within about an hour and only had mild period pains afterwards. They sent me home with a truck load of pain killers which i never needed to take. I walked and got the bus home in the afternoon!
Biopsy results came back within about 7-10 days from memory. Mine were normal and I had treatment for the fibroids but I'm still getting quite heavy bleeding so considering ablation and trying the mini-pill in the meantime.
I'm older than you and also not got kids and as I'm single I can't envisage having them now but I've found my gynae consultant has really promoted options that maintain fertility. I keep telling him I'd rather have my life back than plan for one that probably won't happen!!

@emmathedilemma thank you for your reply.

Phoned the hospital the other day as my GP advised me to check up to see how the waiting list was looking - receptionist said to me that they are just waiting for the next lot of clinics to be released then will be in touch, but are hopeful I will be seen by the end of this month 🤞🏻🤞🏻🤞🏻

I have had mirena coil previously - accidentally (long story, managed 3 months before I had to have it out), have tried the mini pill again recently, managed 5 days before horrific migraines were too much.

Am on daily preventative medication for migraines anyway, just can’t deal with having additional migraines on top of the ones I already still suffer from - despite taking the preventative.

I hope you get seen soon.

There is a BGSE centre in Glasgow; can your GP refer you there?

Please look up adenomyosis as your symptoms sound similar to mine. I had a hysteroscopy as a scan had picked up an ovarian cyst. I thought it was pretty painless especially if you have painful periods. More uncomfortable than painful. When they take the biopsy there is a little bit of pain. I was lucky that I could go private as my consultant ordered an MRI and that is when the adenomyosis was discovered. I had a mirena fitted at the same time as having the cyst removed and it eventually changed my life although it did take 12 months. My sister had the same issue and a mirena didn’t work for her so she had ablation. I think it worked for a time but eventually came back.

@AttilaTheMeerkat - I’m not sure, they initially referred me to Inverclyde, then this guy has referred me to a colleague of his in Paisley.

@Danniotley - I had stumbled across adenomyosis by chance as I follow a few gynae led Instagram accounts.
I asked the gynaecologist the last time I was down there if there was a possibility it could be that, as I felt I had a lot of the symptoms - however he immediately shot me down, and said no, I was “too young”, and that “it is only detected once you open a patient up”.
All of which I knew to be false - yes, I understand it tends to be in women older than myself but there are always exceptions, and I had read that it could be detected in MRIs but didn’t bother trying to say this to him as he wasn’t willing to even engage the possibility with me that it could be that.