Waiting for appointment for gynaecologist - Endometriosis UK

Endometriosis UK

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Waiting for appointment for gynaecologist

Chowchow2020 profile image
5 Replies

Hi everyone,

I got diagnosed with endometriosis around 12 years ago, I'm 30 next month.

But for the past 2 months I have had a major flare up, went to gp who sent me for bloods and an ultrasound - both came back with nothing. Then 2 weeks ago she finally put the referral in for the gynecologist.

I went onto the choose and book system and there are no appointments available and the current waiting time is 32 weeks!! 😥

I had the mirena coil fitted in February of this year. I am taking paracetamol and ibuprofen on a daily basis and also using heat patches and hot water bottles.

In the meantime of waiting for the gynaecologist appointment has anyone had any medication/pain relief prescribed from their GP to make things a little bearable?

I'm desperate - I have 2 young girls I work full time and I don't know what else to do or who else to turn to 😥

Thank you in advance

Michaela

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Chowchow2020
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5 Replies
Rayray1984 profile image
Rayray1984

Hi there I have the Mirena coil and had it put in as part of my endometriosis treatment. I am also on Prostap,that stops my periods, and HRT patch. The mirena coil didn’t ever stop my periods unfortunately, I bled most days with it. In terms of pain relief, before I was put on Prostap I was using codeine or tramadol to help with pain which did have good effects but I would sometimes end up constipated. I then added in laxatives and that helped with that situation. Could you not ask your GP or practice nurse for something a bit stronger. I’ve also had mefenamic acid to replace ibuprohen and that worked better for me too. You can ask for that from your GP also. I called the gynae secretaries at my local hospital to see if there were any cancellations as I had a long wait time, they brought my appointment forward by 2 months when I did that. It might be worth trying to do that also.

I hope you get something sorted soon, I know exactly what you’re going through.

Chowchow2020 profile image
Chowchow2020 in reply to Rayray1984

Hi, thank you for replying.

I don't bleed constantly with coil and it has controlled the flow.

I have a doctor's appointment next Saturday so I am going to ask for something for the meantime.

I have tried mefenamic acid and it helped a little in the past.

Can I ask what is prostlap? And how does that help please

Rayray1984 profile image
Rayray1984 in reply to Chowchow2020

Definitely ask for something stronger to help with your pain, unless there’s a reason your doctor can’t prescribe it such as allergies or any other medication you take, even if you ask for a low dose of codeine to start with (15mg) .

You can buy cocodamol over the counter which contains 8mg codeine and 500mg paracetamol (per tablet). It’s not for long term use though so I think with your pain being ongoing you need to discuss it all with your GP properly.

Some people find codeine and tramadol can make them sleepy or sick but I’ve always been ok with them, again it depends how sensitive you are to opioids.

Prostap is an injection that I get from the Gynae nurse at my local hospital it’s stopped my periods completely and helped me so much with my endo pain, it helps to stop the production of estrogen so I no longer ovulate. As I’m only 38 and still have my womb and ovaries, I do have to have progesterone and estrogen for bone health and other things. It might be worth you having a read about it, it could be something your consultant might offer you. It’s changed my life, for the better.

Obviously everyone is different and what works for one person won’t always work for you. It’s always best to talk to your GP about pain medications etc. It has took me a lot of trial and error to get to this point in my treatment. But it’s worth a read around Prostap and maybe mentioning it at your appointment, when you get one.

Xx

Chowchow2020 profile image
Chowchow2020

Hi, thank you so much! That has been a great help.

I will definitely ask about prostap when I eventually get an appointment. How often do you get this injection please?

I can ring the gynaecology department at the end of December if I haven't heard anything before.

I was going to go to chemist but as you said alot of what is over the counter isn't intended for long term use.

Have you had the endometriosis surgically treated? I had it Lasered around 12 years ago when I was first diagnosed, but I have read that this can cause alot of other issues such as scar tissue and addesions else where which are now on my bowel seen from a colonoscopy in February. It also affects my bladder so feels like I have constant UTI.

Circe3 profile image
Circe3 in reply to Chowchow2020

Hi there,

So sorry your in so much pain!, I have similar symptoms to you and waiting for a Gynaecology appointment myself.

Can I ask, did you have wide excision surgery to remove? I am doing research and this is said to be better than ablation but I guess there are always slight risks.

I hope you can get the pain relief you need!

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