Anyone gone private?

[GFJones]

I’ve been waiting for three years on the NHS for a laparoscopy to get a diagnosis. I know that isn’t a very long time in the world of diagnosing endometriosis but I’m getting to the end of my tether with the waiting and the lack of information. I’ve been on the contraceptive pill to manage the pain but I’m 34 and want to start a family (I find the pain almost completely debilitating when I’m off the pill). I’m considering going private so that I can get surgery before trying to get pregnant but I’m not sure if that’s the best thing to do.

Has anyone else gone private and if so, did you get the answers and treatment you needed?

[Ecclesiastical]

hello, I’m so sorry to hear you’ve waited so long and you’re in such debilitating pain. I’m also 34 and want to start a family. I had a diagnostic laparoscopy last April on the NHS under a gynaecologist, I had an endometrial ablation but the symptoms actually we’re so much worse after and really impacted on my mental health as I constantly felt like I needed the toilet and that I had what I can only describe as toothache in my pelvis amongst many other symptoms I won’t go into.

I paid to see an endometriosis specialist who recommended an MRI which was completed without contrast. It showed was was referred to by the consultant as ‘minimal’ but widespread endometriosis over my bowel wall, pouch of Douglas and uterosacral ligaments and that I also had adenomyosis. I also have a anterior rectocele (great news pre children)

I’m only 12 days post op so it’s really difficult to advise as to whether paying thousands of pounds for surgery is worth it but it really impacts on mine and my partners life. I’m really fortunate as I have a very supportive partner. It makes me angry that we’ve spent what we have on private care (I work in the NHS) but ultimately you have to weight it all up as I’m sure you have done. My only other advice would be to keep in regular contact with the secretaries/booking team as cancellations happen. I’m sure by now you should be fairly close to the top of the wait list if you’ve been waiting three years.

Wishing you luck

[GFJones in reply to Ecclesiastical]

This is why I am reluctant … I am angry that I am put in a position where I have to spend money saved for our house and future plans on my healthcare. I hate being negative about the NHS because I know people are doing their best in a difficult and underfunded system 😢 but it makes me mad. X

[Emmy31]

Hey, I waited for a long time on the NHS. The last year or so was so unbearable I paid for a private appointment in the end. I researched locally private clinics with consultants specialist in endometriosis, I then emailed the secretary and asked a few questions before deciding who to book with. I was seen and she transferred me under her care in the NHS. Started treatment immediately and I felt like she was one of the first people to really understand me. I’m really pleased I went. My advice would be to research first to make sure you find the right person for you.

[GFJones in reply to Emmy31]

Thanks for the advice. From the sounds of it, it is probably worth the investment. I’m glad you have found a physician who understands you! X

[ChelWestie]

I paid private as was told waiting was 8-10months on NHS with pandemic backlog and at the age of 42 I could not afford to wait. I was doing IVF and had a miscarriage and I had 1 FET left. I had the lap op, then moved ahead with next round of IVF two months later with a new protocol considering the Endo diagnosis and am now 18weeks pregnant. I think it’s worth the investment if you’re already waiting 3yrs and life is on hold.

Alternatively I suggest phoning the admin team regularly to try get in on cancellation, eg every week or other week..they will get to know you and make a note that you’re on standby-3yrs is a long time to wait. Good luck with it all.

[GFJones]

Thank you for your reply, it gives me hope. Congratulations 🥳 too on your pregnancy. X

[NM19]

hi,

Sorry to hear you have waited so long- i was the same & still no further forward on NHS sadly the gyno i was seeing just keeps saying see you again im 6 months then i get a letter to say appointment rescheduled which has been another 3-6 months away.

So i went private - had my lap last week stage 4 endo confirmed & as much of it removed as possible. I have a follow up in a week with my surgeon & he also wants to be kept in the loop about my ivf treatment plans to make sure they are suitable based on what he found.. i know i need more surgery in the future as my bowel is attached to my ovary & tube & it couldn't be touched without needing a colostomy bag which as i am due to start IVF in next couple of months wasnt suitable & he believes the main goal is to get pregnant now while still young & healthy eggs are available

He was great & i dont regret my decision - the key for me was to research the best dr for the job & book with them for consultation, discuss a plan of action & be 100% happy before proceeding any further cx

[Donna_kebab]

i went private and had scans with a specialist to diagnose endo. I was 38. I also wanted to try for a baby.

I had the laparoscopy privately - 6cm cyst drained but not removed as was on my ovary.

Got pregnant within 6 months. Miscarriage.

A year of trying again - another loss - then a second surgery - this time same consultant but via NHS as my private care had expired.

Second surgery removed the ovary and cleared tubes.

Pregnant naturally finally at 43.

Took a lot of work - i did health care. Tablets. LOADS of vit D, anti inflammatory teas etc and only drank jersey milk (because cassien protein in milk can make my endo worse). Also no alcohol etc.

pregnancy was a battle but i got lucky. I believe surgery was essential in my case. But it is not the golden ticket and it still took years.

Surgery was not difficult. Recovered fast.

[GFJones in reply to Donna_kebab]

Thank you for this. So happy for you that you got pregnant naturally. What teas did you drink? And why Vitamin D?

[Donna_kebab]

gosh I took soooo many vitamins but truth is most of us are lacking thanks to work and stress and not enough daylight. Vitamin D is important for fertility. Most of us are deficient because you get it from sun (a bit from food but mostly from the sun). I took 4000IU and when I got checked I still had barely normal levels.

Vit C , E and basically all the veggies etc are a big deal if TTC.

I actually tried other stuff too like serapeptase (which I believe helped but my consultant was sniffy about it / jury’s out but I feel it did no harm to try).

I could write a book on all the stuff I did - maybe better for a prvt mssg but I do feel that surgery was a critical thing to clear my tubes and the rest like vitamins was to help boost my health and improve egg quality.

The herbal teas were Nettle, Camomile, Dandelion & Tumeric. All good for anti-inflammatory but once pregnant I cut them as too much herbal tea is not recommended.

i changed my milk to JERSEY milk (Aldi & waitrose sell it). It is non homogenised and lacks a cassien which can inflame endo. I found it helped me be less bloated so maybe it worked.

If TTC id consider hubby too - sperm quality is a big deal and I had mine on vitamins and reduced alcohol same as me. Ha ha.