Endometriosis advice please

[Lisa123wm]

My daughter has quite severe endometriosis, diagnosed last summer by scan as bad enough to be picked up. She was meant to be seen again last October according to her notes.
She’s been chasing basically every week and getting nowhere. Being passed from the hospital back to the GP etc.
She’s suffering a lot and has been in hospital twice since with the pain.
Does anyone know what she should do or who she should speak to?

TIA

[Mary A]

She really needs seen by a gynaecologist. Would PALS be a route to explore?

Wishing her all the best, it's a difficult journey for most sufferers - I had my right ovary and fallopian tube removed when I was 14 due to endometriosis, followed by many surgeries/treatments

[JillyEd]

I agree she needs to see a gynae.
Endo is awful, I know first hand how painful it is having been through all kinds of treatments and loads of operations for it.
I would yry PALS too. Or failing that could she see a private gynae? What area are you in? If north west I can recommend one but if not look for one in your area. Some of them are not specialists in endo so good to find one who is. I found that half the battle, some doctors not understanding it enough to deal with it correctly. Maybe go private for a consultation and then go back on the nhs list.
Endo UK is a great forum with a wealth of information.

I wish her luck amd really hope she is seen soon and that they can help her, its not nice at all.

[Jaybeez]

Your poor daughter, I really do feel for her as I’m currently recovering from surgery which I had due to my endometriosis.

I my area it is nearly impossible to get a GP referral to Gynae. They are currently only taking cancer referrals. I have a history of breast cancer and so my GP kept doing tests and scans until she could find a cancer indicator and got me a referral that way. Fortunately I don’t have cancer, but once I was at the hospital they were happy to take over my care.

We are now also trying to get our daughter a referral, but it looks like we might have to go down the private route. Good luck to your daughter and I hope that she is seen soon x

[disney_l81]

Keep pushing for her to see gynae- is it possible for her to go private at a ll? . I have endo, fibroids, ovarian cysts and recently also diagnosed with adenomyosis so feel your daughters pain. I've had a tens machine for pain before which has helped. GP should be able to help with pain relief options. Hope she gets seen soon x

[marypoppins38]

There was an article on This Morning on it yesterday with a doctor talking to Phil and Holly about it. She had some really useful information about treatments that she said a doctor may well not know about. I only had it on in the background so wasn't watching intently but if you can find it on Catch Up then it would be worth watching.

[Ilovedisney]

Hi

I suffered for years when I was younger, until I had an endometrial ablation. It took me years to get it diagnosed then.
My eldest daughter who is 24 has had issues for years and has spent the last four years trying to get someone to take her seriously. In the end she demanded to be referred to gyny. Lucky for her she saw a great consultant who agreed she needed investigating as all links to to her have endo. She had to wait 3 months and on the 10th June she has a laparoscopy booked. Hopefully she will get sorted.
My advice is make a fuss if you have to but demand a referral. Good luck.

[Lisa123wm]

Thank you all so much for your replies.
My daughter almost passed out with the pain this morning and has had as to take the day off work.
She’s already under the gynaecologist, she had a phone appointment with her last autumn and was told she was being referred for a face to face appointment within 6 weeks to discuss treatment.
So she’s been waiting 6 months and has been trying to find out when she will be seen, to no avail.
So thank you so much for mentioning pals as we’d never heard of them (fortunately never needed to speak to them, I guess).
She’s now spoken to them and they are contacting the relevant people after looking at her notes etc.
They’ve said if she doesn’t hear from anyone regarding this in the next few days, then to get straight back on to them.
Fingers crossed and thank you again.

[Ilovedisney]

Just to add, I complained to PALS regarding an issue with my other daughter and has an appointment within days! So worth trying.

[Mary A]

Originally Posted by Lisa123wm

Thank you all so much for your replies.
My daughter almost passed out with the pain this morning and has had as to take the day off work.
She’s already under the gynaecologist, she had a phone appointment with her last autumn and was told she was being referred for a face to face appointment within 6 weeks to discuss treatment.
So she’s been waiting 6 months and has been trying to find out when she will be seen, to no avail.
So thank you so much for mentioning pals as we’d never heard of them (fortunately never needed to speak to them, I guess).
She’s now spoken to them and they are contacting the relevant people after looking at her notes etc.
They’ve said if she doesn’t hear from anyone regarding this in the next few days, then to get straight back on to them.
Fingers crossed and thank you again.

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Good to read that PALS are helping.

I remember walking to work one morning and having to hang onto a lamppost as the pain was so severe I thought I was going to pass out. Passed out frequently when at school, our form head knew his way to our house to take me home.