Any advice would be great

[Char1291]

Hi all,

I’m wondering if anyone can give me some advice. I went to go a see my gynaecologist at the begging of the year for pelvic pain that I’ve had for that last 9 months. After having a chat with him he suspects it’s endometriosis and wanted to carry out an ultra sound, however informed me that he wasn’t expecting to see anything on this scan. He was correct nothing was seen, only one ovary much lower then the right 🤔

He asked me to think about having a laparoscopy and he would review me in 5 weeks to see what I wanted. However, unfortunately with all what’s happened my appointment got cancelled and was rescheduled in for an appointment over the phone. This time it was a different gynaecologist who turned round and said if it was endometriosis it would have been noticed on an ultrasound. The conversation was left at that and she’s booked me in for a review for March 2021, no mention at all about the laparoscopy just advised to take pain killers for the pain.

I’m now looking at going private to have the laparoscopy to be carried out, I don’t mind paying if it means I can get rid of this chronic pain/ pressure in my left pelvic and leg pain. Can anyone advice me of any good private gynaecologist that can carry out the laparoscopy that I need. I’m based in London.

Any help or advice would be grateful, thanks for reading 🙂

[Moon_maiden]

Endo doesn’t really show on an ultrasound, I believe in certain circumstances it can, but I was told not on a normal basis. Can you contact the first one you saw? Maybe see them privately if you had confidence in their experience.

You could make a complaint to the hospital.

I’m not in London, can’t help on who’s who, sorry.

[Char1291 in reply to Moon_maiden]

Hi thanks for your reply.

I’ve been told that it can’t be seen by ultrasound even by the first gynaecologist, the second one I had just didn’t have any time what so ever and was adamant endo is seen on an ultrasound. I didn’t want to argue with her as at the end of the day she’s meant to be professional trained... 🤔

I’ll see if I can get an appointment with the first gynaecologist as he was much more confident. Thanks for that didn’t even think about seeing him privately, was going to start all over again however not via NHS.

[Moon_maiden in reply to Char1291]

I went private, so much easier, now back NHS, with same consultant.

You do think about is it worth it, etc. I decided at least I could rule it out if nothing showed. I think I’m some ways I was very lucky with the gynaecologist I saw. Unfortunately he was right.

[DAML8]

I have had Endometriosis for 6+ years and it has never shown up on any ultrasound, mri or other scans but I have had 4 excision/ablation surgeries and a hysterectomy with ovaries removed and each time they open me up there is more endo since the previous operation and it spreads to further organs. I would definitely push for a laparoscopy, that is the only way you will fond out for sure. Good luck 🤞🏼x

[Char1291 in reply to DAML8]

Hi thanks for your reply.

Was your pain severe ? Most days mine is just pressure and discomfort than there are days there’s stabbing or as if something’s pulling on my pelvis... strange.

I’m most likely going to be taking the private route for the laparoscopy as I can’t bear another year and that’s just for a review with the NHS. My only concern is I go through with the Laparoscopy and it’s not endo. I don’t want to waste their time but I also want to be pain free 🤷‍♀️

[DAML8 in reply to Char1291]

Yes it has always been, and still is severe. Literally all day, everyday. I’ve been on oramorph for 4+ years! I looked into going private but we just can’t afford it as I’ve had to give up work due to my poor health. You won’t be wasting anyones time!...You have a right to know whats going on with your body..even if it’s just for peace of mind.

At least if you go private you shouldn’t have to wait too long. I waited over 18 months to see my consultant, he operated in Feb 2020, the pain returned almost immediately and now he’s said there’s nothing more he can do for me and i have to learn to live with the pain.

So my advice to you would be...to accept/get any help you can, while you can.

Sorry for waffling on..hopefully it’s helpful info for you x

[Tanya_endo]

I’ve had Endo and it didn’t show up on any ultrasounds or scans etc the only way I was diagnosed was by laparoscopy and while I was under they removed and burned it away, however, this doesn’t mean it can’t come back unfortunately. I had to push for my laparoscopic procedure it also runs in our family with two members having hysterectomies.

Hope you can get a second opinion but don’t give up xx

[Char1291 in reply to Tanya_endo]

Thanks for your reply.

Think I’m going to take the private route, as the time I get a new referral etc that’s another 6 months at least.

I’ve been passed around from pillar to post, first they said it was IBS years ago, last year they referred me to a gastroenterologist and it’s was them that referred me to the gynaecologist.

[Tanya_endo in reply to Char1291]

Keep fighting wish you all the best but don’t give up ✌🏼 Xoxo

[Lily1986]

Hello.

I’m so sorry for your pain and the way you’ve been treated by this second gynae.

I have stage 4 severe endometriosis and know from experience that it rarely shows on ultrasounds.

It may only show the structural damage it is causing. I.e of your ovary is lower than the other then there is a high chance something is pulling it lower.

Can you ring the hospital and explain what the first gynae said.

Alternatively, as you mentioned going privately. It’s ridiculous that we have to do that but it is worth it to be listened to and treated with the care we deserve!

Please, please do not listen to that second gynaes advice. It is wrong and they should not be allowed to fob people off when they are in so much pain and fertility is at stake!

I believed what I was told for 13 years before a doctor actually took my excruciating pain and infertility seriously and now I’m unable to work due to the pain every day and can’t and won’t ever have children.

I can’t advise on a good consultant in London as I’m now living in Cheshire but I’d recommend looking up a BSGE registered one so they will be a specialist in endometriosis.

Sorry I can’t be of more help but I wish you the very best of luck xxxx

[Char1291 in reply to Lily1986]

Hi thanks for your reply 😊

So sorry to hear what you’ve been through.

All the posts I’ve seen it seems everyone struggles to get a diagnosis.

I think I’m going to go down the private route as to be honest the NHS has just fobbed me off.

I’ll definitely have a look at the BSGE registered ones.

Would you think this would mean more scans and test etc on their part would have to be done prior to the lap being done privately ? Or even requesting tests that I’ve had done from my GP and passing them straight onto the private gyna to allow them to have all information required ?

Not too sure on how it works when going private, will have to have a serious look into it.

[Lily1986 in reply to Char1291]

Aw you are welcome.

Initially I was eventually diagnosed and had first two operations (including excision) on nhs.

However it returned worse than before and in that time I’d changed location and jobs.

I had private health insurance with my work which is a perk I will certainly miss if I do resign on health grounds (looking highly likely).

For me they did do the scans privately as it had been a couple of years since my previous surgery. They then did two further operations (one lap and another 6 hour excision)

But I would hope with yourself they would just request copies of your report/ results and go straight for a laparoscopy.

It is the only 100% way to diagnose.

The other positive with going privately is even if you just have that initial consultation (£150 ish) then most consultants can then fast track you through the nhs system (most of them work 75% nhs and 25% private).

That’s what they’ve done with me this time as my hormone treatment isn’t covered on insurance.

And if I do have to leave work and lose the insurance and will need consultations after this bout of treatment I will always pay for that private consultation.

Good luck with every thing.

I think most of them either work under Spire hospitals or Nuffield (mine was Nuffield health)

Xxx

[Lindle]

Ultrasound is highly operator dependent and is excellent at picking up deep endo but only when done by an expert.

If you do have endo then left sided pelvic and leg pain are typical of rectovaginal endo which is deep. Other symptoms are often pain with/after sex and bowel problems. If you do have deep endo then a lap won't diagnose the full extent of it and you would still need an expert scan. You would then be referred to a specialist endo centre of which there are several in/around London.

To get things moving with a clearer picture of what is going on you could have an expert ultrasound at the London ultrasound centre where there are world renowned sonographers Davor Jurkovic and Tom Holland. It's £290 for an expert scan and £390 including consultation.

ultragyn.co.uk/clinical_tea...

[Char1291 in reply to Lindle]

Hi thanks for your reply.

I have all the symptoms that you’ve mentioned plus terrible left groin pain. All my pain is left sided. At first they thought they saw a hernia than said they didn’t so that was ruled out.

I’ve had bowel problems for years and they put it down to IBS, my bowels are so bad I lost 12 kilos in 9 months.L, which has left me at 51 kilos for 5ft10 🤔I was referred to a gastroenterologist who carried out test who then referred me to the gynaecologist as the said I had pcos looking ovaries and one ovary much bigger than the other, but was told it was nothing to worry about and this is very common. However no symptoms to go with that and blood tests ruled that out. So I’m left a bit confused.

It was only when the first gynaecologist that saw mentioned endometriosis going by my symptoms etc, in the past it’s always been fobbed off as gastro problems.

Do you think if I have a lap they will see endo even if it’s deep ? Or do I have to have the scan before to than get the lap carried out ?

I want to get this done ASAP, I’ve been waiting and pushed around from pillar to post for far too long now. If it means going private than that’s the route I’m going to have to take. I’m 28 and I really don’t want to be in the much discomfort/ pain for much longer. Or even to get a diagnosis of something would be great.

[Lindle in reply to Char1291]

A lap only sees inside the peritoneal cavity. Deep endo can be seen but the depth can't and there can be cases where deep endo is outside the peritoneum altogether. You could have a diagnostic lap but given your symptoms it would have to be by someone with endo expertise and if deep endo was obvious you would then need a scan to evaluate it before a surgical lap. Having gone so long you want things done properly now.

I run an endo guidance group with all the treatment pathways if you would like to join. Will pm you. x