Fibroids

[ArabellaScott]

I had no idea this was such a big issue.

Apparently fibroids affect 80% of black women, and 70% of white women, by age 50.

'Mr Narendra Pisal, consultant gynaecologist at London Gynaecology, says more awareness needs to be raised.
"I don't think there is much awareness of fibroids, even in the African-Caribbean community," the expert, who has practised gynaecology in London for over 21 years, tells the Mirror.
"I see women and they are often shocked. It does become a taboo, kept a secret, it is a private thing for a lot of women, they won't talk about it.
"The more awareness we increase, the better it will be."
He has called for every woman at the age of 25 to have an ultrasound - which can pick up conditions like fibroids, Endometriosis, and polycystic ovaries.'

https://www.mirror.co.uk/news/health/beverley-knights-battle-fibroids-affects-29542491?int_source=amp_continue_reading&int_medium=amp&int_campaign=continue_reading_button#amp-readmore-target

@Boiledbeetle I'm so sorry for what you went through!
I did have one regular op for my fibroids and lost so much blood, I needed 2 transfusions. But that was in the 80s.
I advise any woman here with an ongoing condition to have her gynaecologist be a professor. They know all the latest medicines and research. And both mine (men) were very compassionate.

How many of us on here have suffered/are suffering from fibroids and/or endo? It’s shocking. Another one here. Crazily painful periods from age 12 to late 40s, told to put up with it because it was 'normal'. Then finally diagnosed with an ovarian cyst and fibroids by one GP, only to be dismissed by another who disagreed. Had to see a consultant privately in the end. Guess what - it turned out to be endometriosis on top of everything else. What joy.

@SpecialControlGroup I'm so sorry, that sounds utterly horrendous ☹️

I wish I could share some wonder cure. I can't but I can totally empathise with the description! I had a blazing row with one clueless gynacologist once when he started in on the it's just periods shit. I do wonder if he was less condescending to his female patients going forward. As he looked genuinely scared!

Oh, the "just period pain" brush off. I got that aged 26 from a male GP after I'd been brought into his office hyperventilating and vomiting.

At times my uterus resembled a gynaecological horror story. I was treated for endometriosis and ovarian cysts in 1991: before laparoscopic surgery was available, but fortunately also before GnRh antagonists were handed out to endometriosis patients. The really infuriating thing was it took me nearly two years to find a doctor who take me seriously, though I was having debilitating pain attacks.

Then in 2021 I had a bad reaction to my Covid vaccination, bleeding for two weeks, heavily, after my first shot and my booster, when I really thought I'd done with that part of my life. It turned out to be a blessing in disguise because my GP whisked me in for a scan and discovered I not only had a reoccurrence of the endometriosis and a budding cyst, but also fibroids and uterine hyperplasia. After more tests I found myself in hospital having a hysterectomy, because my specialist feared that I might have cancer. Luckily the cancer scare turned out to be just a scare, but I felt so much better getting rid of the fibroids.

The thing I take away from all this is we really need better education about our own bodies. I suspect that my endometriosis had been building for ages before it became acutely painful, but I just dismissed the symptoms as bad periods. Likewise I put the symptoms of the fibroids down to perimenopause. Things would have been so much simpler if I'd been able to consult a "For Dummies" guide to tell me what was normal and what needed checking out!

I’ve got a fairly large one currently growing through my cervix apparently, they want to cut it out without anaesthetic. I’m considering insisting I want to be put under, but then no doubt I’ll have to wait another god knows how many months for a new appointment.

I'm off to hospital tomorrow for a hysterectomy because of fibroids. Have been on the waiting list for over a year. About four years of issues because of them.

It's shit.

The heck? I just had two surgeries for fibroids; the first one in January was an inpatient open stomach surgery and the second an outpatient hyseroscopic myomectomy last week. Both were under general anesthesia!

What your doctors are proposing sounds barbaric!

It’s being done via a hysteroscopy and they told me some women don’t feel anything and others find it extremely painful, but there’s no way to predict (I doubt that, I bet if there was some research into it they could find many indicating factors), but they seem to be ignoring the fact that they’ll also be cutting out the fibroid, as if that’s not even a factor!

I was fobbed off for years too. It was totally debilitating - fibroids, endometriosis - and just dismissed by the doctors. I eventually went privately out of desperation and was immediately scheduled in for a hysterectomy. The consultant said it was really bad - 5 massive fibroids, lots of adhesions, and no wonder I'd been having so much trouble.

Women's healthcare is shockingly bad under the NHS. We are told to just put up with it and piss off. It makes me really angry.

@Naunet - what???? Jesus. I would go back and demand it's done under a GA unless there's a good reason why you can't have one.

Is it possible to get a 2nd opinion?

My last surgery (last week) was a hysteroscopic surgery where one small (ca. 1 cm) fibroid was cut out and the surgeon didn't even mention doing the procedure with no or local anesthesia. He said that his hysteroscopic surgeries are always done with general anesthesia.

I'm not in the UK, so maybe that explains the different approaches. But honestly, what your doctor is suggesting sounds barbaric and uncaring.

Noooooooo please don't let them do that to you.

Oh wow, I wasn’t expecting those replies, I think I just thought I had to get on with it and it was normal!! I’m going to phone them now and tell them I want to be put under - thank you so much for making me aware of this!

I was sexually abused as a child, so the whole thing is already deeply traumatic for me - it took me two years of therapy to even go to see a doctor about the issues I’d been having, so I’ve just been so focused on trying to get myself through it, but I have been really concerned that if it was painful, it could set me back, so I won’t take that risk now.

They tried to do a hysteroscopic biopsy on my cervix. You may want to take a couple of painkillers said the leaflet.

I take a high level of Oxycontin every day. The phone call to the consultants Secretary the next day I was still so distraught and in that much pain that I had the powers that be on the phone within less than an hour and a general anaesthetic version booked in for as soon as they could slot me on the end of a list. (Days not months or anything).

I have very rarely in my life felt such pain. They tried giving me a stress ball to squeeze first. Fuck me!, what's the gas and air thing?, That was next. But I felt like I wanted to die on the spot.

I couldn't stop crying for hours. I felt utterly violated and tricked.

So I would never want another woman to experience that if there is an unconscious version available.

Then definitely no. You cannot do this awake. It was the worst flashback to my childhood i have ever experienced.

Oh my god, that sounds utterly horrific. I’m so sorry you were put through that

Women are regularly bullied into having procedures without adequate pain relief or anaesthesia. It's fucking outrageous. We have to stand up for ourselves and say NO and insist that we are not subjected to this kind of unacceptable treatment.

It is all done for their convenience and speed of getting us out the door, and it's not right.

I think you’re right - I don’t like the thought of being put under because for me, the vulnerability is my biggest “trigger” but reading what you just wrote, combined with the fact that when I went for the scan to diagnose the fibroid, despite the consultant and assistant being absolutely lovely and doing everything right, I still felt traumatised for about 2 weeks afterwards and couldn’t sleep.

Thank you so much for sharing what happened to you, its absolutely awful and it’s made my mind up on how to proceed.

I honestly was shocked at how unsurprised the staff were at the level of pain it caused.

Once the horrible woman who was attempting the procedure had left the room in a huff the two nurses who each were holding a hand trying to calm me down both admitted they would never have it done unless under general anaesthetic.

Now why would they have reached that conclusion if this was an acceptable way to treat women.

They admitted to me that had they actually looked properly at my notes rather than it just being scan says this she needs that and realised which patient I was they'd have never put me through the trauma of it awake.

It's purely to save money, it's nothing to do with women not finding it painful. It's cheaper than doing it under general anaesthetic.

@Naunet also, I know your concerned about going under, but you'll probably find that the staff in the day units tend to be really nice on the gynae ones. they seem more aware than most that their patients might be stressed not just because of the OP.

By the time it comes round for your turn to go under you'll have relaxed a bit. They tend to be rather upbeat I've found.

the day units tend to be really nice on the gynae ones

The staff one the day surgery ward I was on were really lovely and it made a huge difference to the whole thing. I tend to be somewhat - okay, very - manic after a GA and tried to discharge myself before the paper work was done and while they quite rightly wouldn't let me do that, they were very friendly and jokey about it.

That’s good to know. I’d requested a female doctor/consultant, I’m not sure if that will be possible if I go under, but I can ask - therapy has certainly made me more comfortable with advocating for myself in these situations, and from the sounds off it, it’s a skill all women need when it comes to our healthcare.

Anyway, I don’t want to derail this thread with my own issues - sorry OP 😄

I have a fibroid. We found it when I was pregnant but thankfully it’s caused me no issues.

I recall reading somewhere that women often also need more pain relief than men. I'll see if I can find the paper/research.