Endometriosis surgeon Yorkshire

[Brambledoggy]

Please can anyone recommend a surgeon who carries out deep excision sugergy on endometriosis, possibly on bowel, bladder, and I suspect now my sciatic nerve which causing pain in buttocks, down legs. I also have stabbing pains up my vagina, especially at night. Had endo since I was 17, I’m now 48 and hoping peri menopause would help my pain. It hasn’t, it’s getting worse. Laser surgery (three) hasn’t worked for me over the years, my endo is scattered all over and I fear it’s spreading which is scary for me. I now need good advice from a top specialist and my insurance doesn’t cover my condition so I though I could pay, I wondered if anyone had experience of a specialist surgeon who does deep excisions in the north of England or Yorkshire. Thanks. Nina.

[luthien]

We cannot recommend individual surgeons, on here, people can private message you, so hope you get some replies through there.

Have you looked at private hospitals near you? They have a list of specialists online, whom you can look up and check out their skills, once you've found one you can google them to find more info.

I'll message you

[Brambledoggy in reply to luthien]

Thank you, understand. I did my research last time and found a so called private specialist locally in Leeds who lasered off my endo and undertook an endometrial ablation. My endo was small but scattered everywhere, all over my pelvis, bowels, bladder, pouch of Douglas, tubes, I’ve also had a life threatening ectopic and various chocolate cysts taken away. I believe laser surgery is NOT the answer and he “possibly” made things worse by creating scar tissue and possibly spreading my endo further. Who knows without opening me up yet again? I’m in AGONY every month and now have pelvic pain all. Only round in varying degrees. I think I need deep excision surgery which extracts the whole root of the endometriosis not just the tips and someone who can deal with possible damage of the sciatic nerve which is very very specialist. It’s not usual to have pain in your buttocks and down your legs. Anyone reading this, please reply direct or please just try and help me find some specialist advice. Thank you all very much to all endo warriors. 😞 Nina

[luthien in reply to Brambledoggy]

Ahh poor you.

Yeah you're right, it needs to be excision, check out the NICE Endometriosis website, just search that in google! It'll give an idea of what treatment should be carried out.

I know it's crazy but have you considered physio: I know it won't help the immediate and period pain but does your lower back ache? can you use your core muscles / abs? if the answer to those is; yes to lower back ache and what core muscles!? Then you'll probably have like me and most women a weak core, which means the lower back suffers and compensates thus causing referred pain and pressure on nerves in the surrounding area. I didn't know until after surgery when I started to get sciatic like pains, saw physio guy and they said it's normal with women due to periods, bloating, endo, childbirth, sitting, any stomach operations. It can be treated by strengthening the core muscles through specific exercise and massage. I've been doing that for about 8 months and it's definitely helped. I'm not saying your sciatic endo isn't real, it could be, but just a thought. If anything I personally think physio should be recommended during recovery after a lap considering what's been done, it's best done by a movement and mobility specialist one that know about surgical recover.

Sorry for stealing your post! I'll go now! x

[Brambledoggy in reply to luthien]

Brilliant advice and no I hadn’t thought of that. My back is like a 90 year old and my pelvic floor muscles probably non existent! And please feel free to steal my first post. I’m delighted you did. I just wondered also if you had stabbing pains right up your “vagina” (sorry) ☺️ because I have those more and more and especially at night. Wonder what the hell is going on up there. I’ll look into physio later today when I can get out of bed. 🛌 thanks again.

[luthien in reply to Brambledoggy]

No need to apologise regarding stabbing pains question! I did have them but it wasn't due to endo, it's called cervical ectropion, where sensitive cells further up the cervix appear at the base, which can cause needle like stabbing, spotting and pain during sex. It may not be what you have so I don't want to worry you! It's easily treated and isn't cancerous in any way. The stabbing pains could be due to your nerves, I'm not sure.

Hope you're feeling a little better *hugs* xx

[Username12345678]

I can recommend a fantastic consultant who is nhs and private in the north east but I’m not sure how to private message on here! Can you message me?

[CJR99]

Hi Nina,

Not sure if you are still looking for a great surgeon but, I'm travelling from Newcastle to The Wirral, Liverpool to see mine and he's excellent.

I have excision surgery booked next week(he's also cared for a good friend and she is recovering really well) but, please message me if you'd like his details.

Best wishes,Clare

[Brambledoggy in reply to CJR99]

Hi Clare, thank you. I’m on a waiting list now to see a BSGE endometriosis accredited surgeon, so I’m unsure if I get to choose. I heard there’s a good guy in Pinderfields, Wakefield so I’ve asked for him Are you nervous about your surgery? Is it your first op? Nina.

[CJR99 in reply to Brambledoggy]

That’s great news Nina there’s some very good people out there and research being conducted all of the time.Do hope you have a consultation very soon.

I actually contacted Tamer Seckin and he recommended my surgeon!

If I’d been super rich I’d be in NYC seeing him but,would need to take a second mortgage!!

This is my 3rd surgery in 2 years prior to that a lap in my early 20’s.

Got my special bag of tricks to get through the op!Would be lost without it!

I am nervous but,I’m in excellent hands...This guy is a huge advocate of deep excision surgery and I just want all the disease removed to give me the best possible chance.

Best wishes,Clare

[Brambledoggy in reply to CJR99]

Wow. Amazing. Good for you. That’s really worth knowing. It’s so good to know someone else out there knows about Dr Seckin. I called his office in NYC too because my boyfriend said he’d pay for it. He took back his offer though, after I’d told him the cost!! Ha ha. I think he’s wonderful (Dr Seckin, not my boyfriend that is) and wish he was UK based. May I ask how old you are? And where your endo was/is located?

[CJR99 in reply to Brambledoggy]

I know I was quoted $60,000 for a diagnostic lap!!!!Just think all of the handbags you could buy in Bloomingdales with that!!

I too am huge fan of Dr.S....I done masses of research.

Incidentally I’m 47 and am the only case recently of post menopausal Endo up in my hospital in Newcastle.

I had several Endometriomas at the time of surgery and was fast tracked due to potential malignancy.

Endo is on my ureters and bowel.My last lap in September had the two fused together!I was put on Letrozole to try and halt the growth but,unfortunately it didn’t work.

I had to look for a 2nd opinion as the team didn’t know what to do with me and I couldn’t hack the symptoms plus surgical menopause🤪🤪any longer and I’m one tough cookie I can tell you!

So I’m back in on Tuesday at Spire Hospital in The Wirral,Liverpool and it’s cost me £5.5k...thank God for PPI refunds because that’s what’s paying for it!!

Happy to help anyone who’s reading this but,don’t want those looking at a hysterectomy to be disheartened...it doesn’t always return...I guess Endo just likes me!😬

[Brambledoggy in reply to CJR99]

Bloody hell. Yes, you are one tough cookie. 🍪 our pain thresholds are through the roof. I’ve been in denial for a while thinking that as I’m peri-menopausal (at 48) my endo would dry up along with my ovaries!! But I don’t think so anymore. My last surgery was done by someone who said he was an expert but wasn’t because he only lasered off my endo and carried out an ablation. So here I am again. I fear it’s spread because it was always “scattered” all over my pelvic region. I don’t know if you read my profile but I had an ectopic pregnancy donkeys years ago and though I didn’t know at the time, that would have been caused by a blocked Fallopian tube. Endometriosis wasn’t mentioned and so I carried on ignorant. This condition has such a debilitating affect on us ladies. When you say post menopausal, I’m assuming your periods had stopped? But you still had pain because of where it was located? Am I correct? Did you have a hysterectomy? Sorry, bit confused.

[CJR99]

Bless you I totally empathise and I'm so sorry for your loss. I had multiple miscarriages and defo put that down to this debilitating disease.

I was peri-menopausal at the time of surgery. I had a robotic hysterectomy (two surgeons and some robots, yes indeed!!) in June 2017 due to suspicious cysts in my ovaries-I was fast tracked to surgery within 3 weeks of the ultrasound and tests. They removed everything inc tubes/ovaries. I also had fibroids and this is when they finally diagnosed Endometriosis aged 45. i believe I've had it for around 20 years.

Surgical menopause was super rough but, again everyone is different. Plus, I couldn't have HRT due to the risks but, my new consultant has put me back on it so will resume after the op along with lots of exercise which I'm really going to miss!

[Brambledoggy]

Gosh. You’ve been through the wringer haven’t you. Would not wish this disease on my worse enemy. Here’s hoping we both achieve what we need (not want) some time very soon. ❤️