Consultant recommendations

[Misss_r3d]

Hi,

I'm having a bit of a dreadful time with Endo - pain and loads of associated symptoms (fatigue, migraine, faintness) getting so much worse

I have made the decision to pay to see private consultant because I have a complex medical history and i'm really sick of being told to just take hormonal treatment/pain relief as options.

I live in Bristol but willing to travel. Has anyone got any recommendations for endo consultants who are decent? By decent, I mainly mean - who listen, are supportive, not dismissive and want to help find a solution to the problem!

I'm not sure if you're allowed to post names, but please do DM me if you have a recommendation. I'd be very grateful!

Thanks x

[Endosufferer1]

How widespread is your endo? Be prepared to pay around 15k if it's widespread. You didn't have any surgeries, yet?

[Misss_r3d in reply to Endosufferer1]

I'm sorry, should have clarified. Have had two surgeries a few years ago. then had my daughter about 18 months ago). Endo Symptoms came back soon after birth and basically been getting worse in last 6 months. I'm not sure I want / need more surgery - but do need to have a scan / talk through what else there might be. The hormone stuff is tricky because I cant take Oestrogen only stuff and have really bad mental health reaction to progesterone :/ . So I suppose I'm looking for a consultant who can do an initial appointment and possibly a scan and chat through treatment options - but that's it to begin with.

[EmJGilly in reply to Misss_r3d]

Hi, In relation to your reaction to progesterone I was the same with it affecting my mental health, my consultant then tried me on uterogestan a bio-identical progesterone and it was great, no side effects. It’s just a thought. I had a sub-total hysterectomy 6 years ago for endo which did help alot but unfortunately I started getting symptoms again last August, I’ve just had my 2nd decapeptyl injection, I had a big flare up after my initial injection for about 10 days but since then I’ve felt the best I have in months, It’s too early to tell for the 2nd injection yet as I’m only day 3. I live in Exeter and see a private consultant the main reason I went private was for the speed of being seen and you do get more options plus I wanted to have continuity seeing the same consultant that did my previous surgeries and knew my history, I’ve been happy with his decisions so far, If you would like his details let me know.

[65br in reply to EmJGilly]

HI, im really struggling with Dianogest (progesterone)also :(. I think because even if i have no periods on it, it still allows ovulation, which is when symptoms are the worst for me. I will try Ryeqo next but that has a little estrogen in it , on the plus side there is no ovulation on it and its meant to be an overall better treatment (officially for Fibroids). Had endo surgery in Dec 2022 but continue to have lots of pain due to adenomyosis, and all the other debilitating symptoms, like dizziness, migranes with ear ache, extreme fatigue, pains down legs and back, sleeping problems, palpitations and so on. Can't work at all. Very disappointing after paying a fortune for a private surgery.

A bit confused about decapeptyl injections, if you had your uterus out and you are in menopause, why do you need to take the injections/ any hormones? Thank you, all the best

[Endosufferer1 in reply to Misss_r3d]

Did endo show on your scans (more easily if you had a cyst)? Because for my part, it was a waste of money and energy. Congrats for having a child (don't want to be pessimistic, but your daughter has got 60% chances to get endo, it's genetics, make sure she eats properly and reduce the intake of oestrogens like lactose, soja, alcohol when she's older and reduce stress for her to get higher chances not to get endo...). All the best to you and your daughter!!!💞

[Gardenist]

From my experience its the same consultants as the NHS (they usually work part time private) you just get to see them faster and as you are paying directly and not into a big pool via tax they let you make a few more choices. I'd use private medical insurance if you can as the bills are eye-watering. I had the same surgeon do 2 of my ops one private one NHS. There was no difference in the quality of the work but a huge difference in attitude towards me. It taught me to politely byt firmly fight my corner with the NHS. It's not free after all and we deserve better care.I've also found that looking at my diet, sleep and stress relief have had a hugely positive impact on my symptoms. It might be worth finding a professional that can help you with wellness alongside medication as it's out of the scope of most doctors.

[Mew92]

Hi. I would recommend Spire hospitals. They are private hospitals but from my recent experience they are very good. Luckily I have health insurnace from my employer so I have recently been there and got diagnosed with Endo. Just been offered medication which slows down the womb producing the cells which cause the problems. I flat out refused the pill as we didn't need it and I have bad mood swings when taking them. So he offered this medication specially for Endo but I can't say what it's called yet as I'm waiting for my prescription to arrive.

But I've had very good experiences with Spire hospital in Cardiff, South Wales.

[G3miniStar]

We can't name names on here, but I would look at the BSGE centre list and do some research on the closest ones to you, then find out if the head of that centre works privately. That's what I did and I see my consultant on the NHS and privately occasionally.

[Misss_r3d]

thank you all super helpful