BSGE Gynae said he will remove with ablation ?! Advice please

[nessienoms]

My first symptoms started 7 years ago when I was 19, I have severe pains mostly from my right ovary and low back and my periods are unbearable. I first had a laparoscopy in November 2014 where nothing was found.

After another long battle with my GP I was sent to a different hospital where I had my second laparoscopy. This was with a generic gynaecologist, but she found endometriosis on both of my ovaries and the back of my uterus. I was diagnosed with stage 1 endo and she told me it was removed by ablation. I was out of pain for around 2 weeks and then my pain was back. I bled for 10 weeks after the surgery which definitely increased my pains.

I have been struggling since that surgery but I have tried my best to carry on. My GP will not give me any strong pain relief as im still young and she doesnt want me to get addicted to them so instead I am left in daily pain unable to do much.

I have been on the combined pill for 7 years and thats the only treatment Ive been given.

I was referred back to the gynaecology team 1 week ago at my local hospital which also happens to have a BSGE Endometriosis centre. I was absolutely shocked to get an appointment there 6 days after the referral was sent. I believe I was just referred to general gyne and I had no idea who I would be seeing but to my surprise my appointment was with the BSGE Gynaecologist there.

The appointment has left me feeling very stressed. It was VERY rushed, he didnt have any of my medical records. I had written on the form I was there because I was having pains from endometriosis and he asked me why and how I knew I had endo. He spoke to me for maybe 5 minutes max, he asked when my last surgery was and what medication I am currently taking. He then said I will be added to his surgery waiting list and that was basically it. I didnt get a very good vibe from him he didnt seem to care at all, he didnt even ask me what symptoms im having. When he asked me to sign consent forms for the surgery I asked how it would be removed if he finds any. He told me he doesnt know until the surgeons go in there he said they would use ablation if theres a small amount or excision if there is a lot? Surely he should use excision even if there is only a small amount considering this is causing me so much pain and will be my 3rd operation.

I feel so stressed about the whole appointment. I left feeling as though he didnt believe me and he wont help me. Im feeling like this surgery will be a waste of time if he is going to use ablation to remove it. I have had such a bad experience with my GP and this hospital so now I feel like they wont find any endometriosis again and they will tell me its all in my head.

Does any one have any advice? Is this the normal procedure from someone who is supposed to be a specialist or should I ask to have another appointment to talk this through? Thank you for reading and any replies would be much appreciated.

[HellyLlewelly]

Hi what area do you live in?

Absolutely not the norm. A BSGE Surgeon telling you he will ablate is absolutely counter productive to Surgical reoccurance of the disease. My last Surgeon let me interview him basically and he said "ablation is for those who do not know how to excise".

That's all. 2nd opinion maybe?

Women are waiting 4.5 years on such appointments in Northern Ireland. This is absolutely dumfounding that you were seen by a BSGE Surgeon so quickly. Great for you of course.

That statement from this Surgeon is definitely a red flag though.

X

[nessienoms in reply to HellyLlewelly]

Hello, I am in South London I was seen in Croydon University Hospital.

I was so excited when I heard the nurse say my appointment was with this man as I knew he was the named specialist on the BSGE website, I thought if I have surgery by him he will excise it and I may be pain free for a year or so at least! Now i'm very unsure of what to think. I couldnt find much about peoples experience with him online apart from one review left 3 months ago.

A lady said she had a laparoscopy by him to find and remove endometriosis but when she woke up he said he hadnt found any at all and to leave it a few years. When she took her surgery pictures and notes to get a second opinion elsewhere the gynae saw endometriosis in the photos and had to do another lap spending 2 hours removing it.

Thank you for replying, I think I'll express my concerns to my GP and ask for a second appointment or call with him to talk this through x

[Lindle]

There is no clear evidence that excision is preferable to ablation for removing peritoneal endo. The skill of the surgeon is what matters rather than method, but laser vaporisation is the preferred ablation method.

[nessienoms in reply to Lindle]

That makes me feel slightly better, thank you for that information.

[Lindle in reply to nessienoms]

You might find the article below useful by US excision surgeon Dr Andrew Cook.

contemporaryobgyn.net/view/...

x

[nessienoms in reply to Lindle]

Thank you so much x

[Moon_maiden]

I hadn’t a clue when first diagnosed as only went to discuss fibroids. I looked up gynae that appeared to be nice and experienced initially. Once I had the diagnosis and he said he used Helica, a form of burning, I did lots of research and stayed with him for lap. It had a pretty good success rate. Next op is with his colleague who runs BSGE as more extensive, but I still wanted to meet him to be sure, over the phone didn’t cut it.

This is a really hard condition to judge and with all the experiences women have it makes things nerve wracking.

I spoke to the secretary as neither follow up letter mentioned getting rid of endo only hysterectomy. I’ve found out that they are allowing 3 hrs for op. Makes me feel a bit better about it, but it’s making it a problem in booking the blessed thing 🤦‍♀️

Maybe speak to his secretary or if you can afford it see him privately to discuss things.

None of them will commit to what might be there.

Hope you can get them to clarify things for you 🙂

[nessienoms in reply to Moon_maiden]

Thank you for replying. I think I will send my concerns to his secretary and see if they can clear up my concerns for me. I was considering paying for a private consultation with him as I felt the appointment was so rushed but I'd be worried paying hundreds of pounds just for him to be the same way. He seemed to brush me off and had no real care for my health so it was very disheartening. Good luck with your next operation, I hope it all works out for you :)x

[Moon_maiden in reply to nessienoms]

Let us know how you get on with the secretary and answers.

I’d felt the same way, he’d been ok on the phone, sort of, but didn’t get left with confidence. I’d felt it was worth paying to clarify things, at least in my mind.

[HerbM]

Your experience sounds very like my daughter's. I know we're not supposed to post about specific hospitals and consultants here but it seems like it would be so useful to know who are the consultants that treat women with the respect and compassion they deserve. Sorry to be of no help! I did contact a private clinic to see how quickly they would respond and what their attitude would be and was very favourably impressed. I've encouraged my daughter to ask for a second opinion and she's waiting for a referral to another hospital. God knows how long she'll have to wait though. Really hope you get what you need. Keep researching and arming yourself with info. My daughter lives in London and all the appointments etc have also been in London.

[nessienoms in reply to HerbM]

It really would be useful to know of other peoples experiences with certain consultants! I think people are more open on facebook so I may have a little browse and see if I can see anything about the hospital im under.

With my second laparoscopy (4 years ago) I was lucky enough to be sent as an outpatient to a private hospital in the Croydon area. I have to say the care was absolutely amazing. Within a few minutes of meeting the gynaecologist there I trusted her, she was so interested in listening to me and what I was going through. She was a general gynae but she found my endometriosis even though it was only mild. Weeks after my surgery I had quite a lot of bleeding and she saw me within 2 days, she was so caring and would do anything to ease my mind or help me. After I had the disappointing appointment on Thursday I looked to see if I could see her again privately but unfortunately she has retired.

It is so important to have a gynaecologist or surgeon that you genuinely feel you trust with your health and body. Fingers crossed your daughter gets the help she needs from the best possible person, it can be a long battle and very hard to go through but when you find the right person who will help you its worth it!