Crying over a year wait for gynecologists

[Scaredofmynipple]

Just that I have other health problems. 61 weeks until I can see a doctor. I'm in floods of tears. Cant even ring them up to check for a cancellation as they don't do them apparently. 😭😭. Just a rant I know it's useless. I hate being a woman sometimes I really do.

@ClaireEclair thankyou so much for this info

I know you keep saying you can't use any contraception but sadly that is the medical treatment for endo, Mirena coil, combined pill, progesterone only pill and then scarily chemical menopause for 6 months which obviously means you cannot get pregnant at that time.

The NHS doesn't like to fund a laparoscopy because it is costly and they can treat it with medication as a first step. Secondly there is roughly a 70% chance of adhesions from keyhole surgery. A laparoscopy is the only definitive way to diagnose it but they go on the assumption of it being endo and treat accordingly.

A laparoscopy paid for privately would be in the £3.5 - £4k ballpark. Usually you can pay for a private appointment with an endo gynae who can then write to your GP with a treatment plan but due to you wanting another child that rules out a GP approach. So a private gynae appointment would probably lead to the laparoscopy. Could you fund that? And yes I have endo. diagnosed over 20 years ago.

Meant to add this link

www.endometriosis-uk.org/treatment-and-management

this is correct. all treatment for endometriosis is contraceptive. The only exception is when you have a laparoscopy and zap the deposits, and that only lasts for a while - they grow back

Maybe you should hang fire on ttc if you are being investigated for endo? Is that something you would consider? As for gynaecology waiting lists, I totally understand your frustration. I was referred in June 2021 for irregular bleeding, still not heard from the NHS. When I phoned to ask how long the wait would be I was told that they couldn't estimate but could be a year at least. My dh has bupa through his work. I've asked for a referral from my gp who sent it to a spire hospital today. He spoke to bupa through his work today and got an authorisation code. I am going to phone tomorrow to book the earliest appointment I can, giving the authorisation code so they know payment will be through insurance. Its as simple as making sure you get each stage of treatment authorised by bupa. The excess isn't cheap but I can't put up with it for much longer.

I totally appreciate that going private isn't an option for everyone but is it something you would consider?

@Scaredofmynipple

i don’t know where you are but this link might help

www.nhs.uk/nhs-services/hospitals/guide-to-nhs-waiting-times-in-england/

ithink you can opt to go elsewhere, but I would check your hospital on the planned care list, my local one shows a 16 week waiting list, still bad but better than yours

The services for woman are utterly shocking. I was diagnosed with adenomyosis after my first dc was born nearly 10 years ago. At that time I had heavy painful periods but I could manage. It's taken me since then till September last yr to be referred to gyneacology. I've spoken to so many Drs had several transvaginal scans etc where I'm told it is getting worse. The two female Drs at my local surgery, who are apparently specialists in this area, refused to refer. I then spoke to a male Dr about something else and told him about it he referred me straight away.
I got a letter in October for an appt this October. I was so happy to actually finally get an appt but my periods are so horrendous now I'm vomiting most months due to cramping and I flood often.
I hope they can see you soon as it's awful thing to go through.

@Scaredofmynipple
Have you actually rung the appoint line at hospital because I was chasing something with docs and I got the same old line oh yeah it's taking ages and ages to get seen but I pressed them and they Gave me hospital no.

I called and was instantly given appt Wituinjn two week's??
I said what woud have happened had I not called and he said you woud still be waiting.

DO TRY and call directly.

So are you just looking for a diagnosis then? Because I don’t think people are trying to be unkind even though you’re losing patience with all the people mentioning coils, but have you researched the treatment for endometriosis, OP? As others have tried to point out, very gently, the medical options ARE forms of birth control, such as the coil (that’s what Mirena is, as one person mentioned), or other things that would stop someone TTC, like hormone therapy. Besides those, the other options are surgical and 1. They’re very unlikely to approve those before you’ve tried any medical options, 2. Surgical options will either stop you TTC or not be an option if you’re pregnant, and 3. If your endometriosis is that advanced, causing constant pain, missed periods, if there are adhesions to your bowel or other organs, etc, the NHS’ surgical recommendation may be a hysterectomy. If you have specific endometriomas that are blocking your ability to become pregnant, they MIGHT consider surgery for those. Otherwise, they will most likely spout out the line that “most” women with “mild” to “moderate”* endo get pregnant naturally (though from what I’ve seen, it can take a lot longer, and I know that can be heartbreaking to deal with every month), so if you want to TTC, you may be left with no endo treatment. I’m sorry you’re dealing with this; I’m sure it feels incredibly unfair that you may have to face these choices (constant pain or stop TTC), and I really do hope they can find a solution for you.

*Please note that I’m using mild to moderate as medical terms. There is no real “mild” endo, IMO. It almost always affects a woman’s life in the form of pain. By mild, doctors mean there is less ‘out of bounds’ tissue growth.

That's not entirely true (wouldn't approve surgery before trying medical options) - she'd need a laparoscopy to diagnose and they can zap any bits of endometriosis/remove an endometriotic cyst then. A woman's TTC status does change management. But it grows back so you want to then hopefully conceive and get on to some contraception after pregnancy to keep it under control

Much sympathy from me.
Sadly. I would advise any woman with endo/fibroids/ hormone issues to go private.

The NHS is dire with these issues and at times are dangerous with them.

If you can go private even just for the initial consultation I would. Often the same consultant you see privately is the one you see with NHS, so you can transfer care back having moved along more quickly.

@monitor1

DOESN'T endo potentially cause cancer though so zapping it good?
How long does it take to grow back?

This is poor advice - it won’t get you access to gynae any quicker

Did you mean my advice to go private?

Payong for a private appointment will absolutely get you access to a gynae quicker.

No it doesn’t. There is a barely calculable increased risk in ovarian cancer in women with Endo, but it’s still minuscule and hardly more than any other woman.

I think lots of people are just going private now. It’s your health. There’s nothing more important, so if you have the money, just do it.

I feel for you OP.

I've finally got an appointment with gynae consultant next Monday. Sounds like similar issues to yourself.
I was referred in Nov 2021 and it's taken until Feb 2023 for this appointment

OP just seen your post. I'm in Exactly the same boat and told its minimum 58 weeks wait. They tried 5 other hospitals in my area and all the same. My GPs done all he can and I'm like how can I wait this long in pain trying to care for 2 very young children.
For anyone who says your being unreasonable clearly don't deal with what we're going through or they wouldn't say nasty things.

Sending hugs.

Is laparoscopy the first step to diagnosis? I think most of the women I know had vaginal ultrasound first, since it could show the uterus and the lower bowel and is much cheaper. Then if there were irregularities or a definite endometrioma (which US will show), they’d have a laparoscopy to see the upper bowel, other organs, and higher above the uterus and to have the endometrioma removed (I may be getting it wrong about exactly which showed what; I just know the ultrasound came first and for one of my friends, it was determined from a vaginal ultrasound that she had a few significant endometriomas that had to be removed). Maybe the “first step” has changed to laparoscopy?

How are you getting on ?

Ask nhs gp to blood test ca125

Many with endo have high/ abnornal ca125

Then they need to find reason 4 that so if thats high - youll likely go on urgent list...

Ive been in & out of hospitals 4 many things the past 5 months .
Gynae appt is this month

Had ovarian cancer ruled out with transvaginal

Had bowel cancer ruled out with urgent colonoscopy