Wait for NHS laparoscopy or go private? - Endometriosis UK

Endometriosis UK

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Wait for NHS laparoscopy or go private?

Jodine381 profile image

Hey everyone,

I've been suffering with debilitating endometriosis symptoms for 9 years now and have finally been put on the NHS waiting list for a laparoscopy but because of Covid they are still working on patients from 1 year ago so I'm really tempted to just go private.

My main concerns are around fertility.

My boyfriend doesn't want to start trying for a baby for another 9 months so I'm worried that if I get the laparoscopy done privately, the endometriosis will have grown back by then. But then I'm worried that if I wait any longer for the NHS appointment, I could risk doing further damage and hurt my chances of conceiving.

I'm pretty sure I should just bite the bullet and go private but I'm just wondering if anyone has any advice if they were in a similar situation.

I'm really exhausted going back and forth. 😥

19 Replies

Contact them to ask for a sooner appointment. I was put on the waiting list in March/April 2021 and had my surgery in May!

Jodine381 profile image
Jodine381 in reply to Hunter-23

That's amazing you got seen so soon!

Did you have any scans or anything before? I only ask because I feel like I don't have any 'evidence' and they don't seem to believe the extent of the pain I'm in.

I waited 7 months for a hospital appointment to update my ultrasound but when I got there the doctor didn't bother because she said there was no point because it wasn't endometriosis because I have nerve pain in my shoulder with my period.

Would they move me up the list based on my words alone do you think? 😥

Hunter-23 profile image
Hunter-23 in reply to Jodine381

I had a USS through the GP for fibroids.Then asked them to refer me to a selected specialist.

Had an MRI with the Endo centre.

Both scans showed up nothing unusual.

Told the consultant I wouldn't take birth control nor was I hanging around for years for a laparoscopy.

Diagnosed and excised Endo during my lap shortly after.

Hunter-23 profile image
Hunter-23 in reply to Jodine381

If its affecting your mental health then yes! I emailed stating my dismay for the lack of care in female health and that if I was a man I'd be taken much more seriously. I also mentioned it was affecting my mental health and the care I could provide for my children in all aspects of life. Physically, mentally, emotionally etc.Obviously about the fact I wouldn't take birth control as the first port of call as a laparoscopy if the gold standard.

The consultant was very understanding thankfully!!

Jodine381 profile image
Jodine381 in reply to Hunter-23

It really is affecting my mental health really badly now. The doctor I seen didn't seem to care and didn't really listen to my concerns so I felt like my only choice was to just wait for the laparoscopy basically. But I will definitely try and get someone else to listen to me now. Thank you so much for your advice. I really appreciate it. ❤

Hey it personally took me 7 months from when I was out on the list for my lap to actually getting it done. It took a lot of chasing the consultant/GP to finally get me a date as I was really struggling with pain. Fertility was also my main concern and unfortunately both my tubes are blocked so will need some help to have a baby. You can try and expedite your case to be put on the urgent list which would mean you get your surgery sooner. Good luck! Xx

Jodine381 profile image
Jodine381 in reply to ZiggyandBC

Thank you so much for sharing your story, it really helps to hear different experiences. I'm going to take your advice and try and chase it up to be seen sooner. Thank you and good luck to you too ❤

ZiggyandBC profile image
ZiggyandBC in reply to Jodine381

No problem at all, I hope you get your date through soon! 😊❤️

Im in same boat got told that to even speak to gyne would tske 6 months... so I found a privte endo speacialist he suspects endo too and he has put me on his nhs list he sed at the moment looking at 12 months for lap. Or obv I habe option to pay.Im in dilemma what to do as I get married in Sept and wanted to try to conceive after that. I have already had a neonatal loss 13yrs ago.

At the momeny Im thinking if the list is still over 6months wait following my wedding then ill go ahead and pay for private because like you the longer its left the more damage may be done. Ive had to go back on contraception to try and ease symptoms and pain... its just so sad and wrong these waiting times and seems everyone is in the same boat at the moment with long waiting times x

I'm so sorry to hear about everything you've went through. You're right, it's so frustrating to see so many of us having to fight so hard just to have our health taken seriously. It's awful we have to even consider forking out so much money for treatment. I'm so tempted to just go private too so at the very least I can find out where I stand fertility wise. Thank you for sharing your story, it's really helped and I wish you the best of luck ❤

Thanks x this page has been so good to learn more and speak to otjers in similar situations x if you do think youll go private then go on this.....

bsge.org.uk/centre/ and find your neaerst centre, then search the gyne and see if they run a private clinic xxx

Thank you so much! I'll definitely look into this x

I went private through my work, saw a consultant within 2 weeks and within 6 weeks I had a laparoscopy and a diagnosis. I then went on to make a decision to have a hysterectomy.

What I would suggest in regards to trying for a baby is it could happen anytime and you really need a consultant to advise you on your fertility. Obviously you could wait 9 months like you’re boyfriend wants but there’s no guarantee that it would happen then.

Make sure he is as well informed as he can be and it will help you make decisions together and he will understand.

Good luck xx

Moonglo profile image
Moonglo in reply to Welf14

I was going to say the same thing - I think your boyfriend needs a gentle dose of reality, that pregnancy is not guaranteed to happen for those of us with endo, and not to a schedule. Your health comes first, and you need to pursue your treatment as soon as you can, and get a professional opinion on your fertility and options.

Jodine381 profile image
Jodine381 in reply to Moonglo

You're absolutely right. I think he thinks I'm just being impatient but I'm keen for a reason. The sooner the better with this so I think you're right, I need to get seen and get some answers as soon as possible and if that means going private then it will be worth it to at least know what I'm looking at.

Thank you so much for your advice. It has helped a lot ❤

Jodine381 profile image
Jodine381 in reply to Welf14

That's amazing you got seen so soon! I don't think my work do anything like that unfortunately so now I think my options are to try and push for a sooner NHS appointment or pay privately.

You're absolutely right about the no guarantees and that's why I don't want to wait any longer. It is difficult to try not to sound like I'm pressuring him but sometimes I don't think men understand just how much we are potentially sacrificing by waiting and what's at stake. I'm going to try and get some advice from my doctor and speak with my boyfriend again.

Thank you so much ❤

Welf14 profile image
Welf14 in reply to Jodine381

I hope it all works out for you I really do xx

I lost my fertility due to Endometriosis. NHS is in such a state due to covid, to preserve your fertility you could look at having the coil fitted until your ready to try for children. This will stop periods, stop flare ups of endo and stop further damage endo causes. Plus once the coil is removed you can try for a family straight away, no waiting for your body to get back in sync like after taking the pill.

All the best

Jodine381 profile image
Jodine381 in reply to Tinpen66

I'm so sorry to hear that. Endometriosis is such a cruel condition. We were all already not being listened to and then Covid came and made it 10x worse. That is a good idea. I never thought of that to be honest, I was just always so adamant that I wasn't going back on the pill. Thank you so much for your advice ❤

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