Fibroids, cyst, bleeding, pain... gaaahhh! 😫

[LucyLokitt]

I'm looking for advice and support...

37 years old. In last 2 years have had 2 miscarriages, both at about 8 weeks. After the first one, ultrasound scan revealed 3 fibroids, all about 3-4cm diameter. Had been struggling with very heavy menstrual bleeding and anemia, so that explained that. During 2nd miscarriage, USS revealed an ovarian cyst. I had one back in 2016 that became torted and had to have emergency surgery to remove very and fallopian tube on right side. I was referred for recurrent miscarriage last June.

A month ago I went to my GP in desperation because the bleeding and pain has been making life and work really difficult. She put me on combined pill. 3 weeks later, I'm still bleeding (have bled every single day). I've now been prescribed Tranexamic Acid and Diclofenac and started taking both this week, to coincide with my withdrawal bleed. GP suggested may need stronger dose of contraceptive pill. TA has certainly reduced flow a bit, but not by much. But the pain has been really bad. Noticed about 3 months ago that it was often in left side of pelvis but now I really now it. Especially bad after eating. Codeine helping but both that and other options wear off after about an hour and pain is back. GP had said that it looks like my referral consultation will be in May, but no letter or date yet and worried it may get pushed back. My big concern is that the ovarian cyst they found last June has grown and is the reason for the pain in left side. I don't want to lose my remaining ovary or it's curtains for hopes of having children. Not sure if I should wait until May appointment (assuming it happens) or go back to GP now. What can they do? May is the soonest the hospital have been able to offer after nearly a year of waiting. Equally, the pain isn't so bad I'd go to A&E (based on memory of previous cyst pain). What would you do/have you done in this situation?

Huge thanks in advance for any advice you can offer.

Waiting lists for gynaecology on the NHS are miles long currently.

If finances permit I would consider seeing a gynaecologist for an initial consultation at a local private hospital. You should be seen asap given the pain and daily bleeding (have had this too so know all too well what it is like).

Thanks for your reply and your advice @AttilaTheMeerkat

DH has suggested we consider private, even though going through the full thing would cost us a large chunk of savings we've been scrimping for for fixing our roof. Can I ask what your experience/situation was? Don't worry if you'd rather not share, though.
@AttilaTheMeerkat

Op, please please please see a gynaecologist privately as anything ovarian should never go unchecked. Your life could very much depend on it. And whilst that may sound drastic and there is such a thing as an innocent ovarian cyst the reality is that too many women find out way too late that theirs wasn’t so innocent after all and by the time they find out they already have advanced stage cancer. I’m not saying that’s going to happen to you but my story is that I had a history of ovarian cysts for years. They’d come. They’d go. Until the day one grew to 6kgs and I wrongly thought I had a menopause belly so I didn’t go for a check up until my cyst was already stage 1a mucinous ovarian cancer. I’m considered fortunate that it was caught so early and no chemotherapy has been needed but truth be told there’s no such thing a luck with cancer and even 10 percent chance of recurrence 30 months after diagnosis is very little comfort. Your roof can wait. Your health can’t.

I am about to have surgery on an ovarian cyst and I have been amazed at how fast the process has been. I had an MRI and saw the consultant 2 weeks ago and my pre assessment for the op today. We're nearly May,it sounds like they're on it.

@MrsPelligrinoPetrichor I’m not in the UK but from my cyst being found by co-incidence during Covid it was two weeks to the day later that I had my staging laparotomy. And even then there was nothing about my cyst that was concerning them except the size of it. Even so my surgery was done by a Gynae-Oncologist as they’re considered to really know there way around our bits and pieces.

What surgery are you having done if it’s ok to ask?

I received my referral appointment letter this morning (17 May). Not long to wait now. I was referred for recurrent miscarriage and appt is with a gynaecologist, so hoping that if I mention all my symptoms (inc pain in left side), they will sort out investigation. Since I first posted, pain has subsided a lot from what it was, so thinking it was connected to withdrawl bleed (which I assume my body thought was a normal period!). I've no idea though.

Thankyou for sharing your thoughts and experiences. @MrsPelligrinoPetrichor Sending you all the very best for the surgery and a quick recovery.

@PollyThePixie I'm so sorry to hear about what you've been through. Really appreciated your words of caution, too. I'm in 2 minds: now pain is less, tempted to wait until May appt. Did anyone else get worst pain around period (even if on the pill)?

Removal of ovary, cyst and fallopian tubes. They cyst is too big for keyhole surgery so it will open surgery. Not looking forward to it at all tbh.

Not sure if anyone is out there, but hoping for advice.

Got my consultation in May and booked in for USS and TV USS which I had today. No ovarian cyst, which is great, but radiologist mentioned change in fibroids and then back tracked when I asked if they'd grown. I can only think that's the case with the symptoms I've been getting and cyst ruled out.

Now, when consultant booked me in for USS she also booked me for an investigative hysterocopy. She said they may remove a submucosal fibroid depending on how the procedure goes. I've been told the usual about taking painkillers beforehand, etc. It's a week from now.

I won't get USS results until about then. Feeling very confused and anxious. Will the growth of the fibroids effect whether they can do the procedure? Has anyone else had a hysteroscopy where it went from investigative to operative at the same time/on same day? Did they offer local anesthetic before trying to remove anything?

Thankyou in advance for any help you can offer.