Just to give you all an update, had the diagnostic laparoscopy with the specialist in Yorkshire so he could map where the endometriosis was and whether or not it could also be something to do with "inflammation changes (?)", which he said was a possibility with my age and would be harder to treat, and to check if I had adenomyosis.
He didn't tell me much after the surgery, just that there was other things as well as endometriosis and that I had a bulky, retroverted uterus (been to many gynae examinations, never been told that before!), and he said he had a lot to explain and wanted to wait until i saw him at his London clinic.
Two weeks went by, until I saw him. During the consultation I was told that, not only did he find endometriosis (as expected) & old scarring from previous ablation surgeries, but that it appeared the previous surgeon didn't even touch the left hand side of my cervix, had vascular changes all over, a cyst on my left ovary, a fimbrial cyst on my right fallopian tube & endometriosis on my bowl. He also explained that, with the retroverted uterus, it could be why sex is as painful as it is as penetration was hitting my ovaries and the way it was tilted meant there was pressure on my bowls.
Although it was more news than I expected to hear, was glad he was able to explain everything.
Been booked in for the TPPE surgery (which the insurance company has agreed to cover most of), and ventrosuspension in October.
The only thing that I'm feeling a bit emotional about is the date. I'm booked in for the 31st, which is my mums birthday. She passed away after a very hard 3 year battle with cancer. I am grateful for being able to get booked in so soon after having the diagnostic, I just wish that I could be at home with my dad and sisters on that day instead of being so far away having an operation. Guess I could just take it as my mum's parting gift, having a potentially life changing operation on her birthday and she's looking out for me.
Anyway, there's the update. Hope you've all having as pain free a weekend as possible.
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littlestar01
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Hi! I am booked with the same specialist ( I think) for a treatment op on the 28th oct! I had my diagnostic lap by the NHS and was not given a clear idea as to where, what they found although they did confirm endo. Was just told they just wanted to shut my ovaries down and I would be fine! This didn't sit right with me so I went to see the consultant you are seeing. He didn't want to put me through another lap so soon so he is just gonna go in and do his stuff from what I gather. I trust him totally and really hope he can give me a full diagnosis and treatment. I am really looking forward to having the op as I am struggling so much at the moment. Everyday it seems I get a different symptom and I am truely exhausted! I'm so sorry to hear about your mum, it does seem ironic that your op is on the anniversy of her death. Let's hope you have lasting relief from the operation!! It must be a relief knowing exactly what is wrong now.. And at least you now have the best chance of getting better!! Sending loads of positive thoughts your way! Xx
He is a fantastic specialist, hunted him down as it took 11years to get the GP to listen and refer me & have the surgery to be diagnosed, and then 2 ablation surgeries (2010 & 2013) after that, I'd had enough of only getting a few months relief and not having a "normal" life since I was 9.
Hope your surgery goes well and hope the pain is as manageable as possible x
All I can say is you could not be in better hands. The fact that he was able to give you such a detailed diagnosis speaks volumes. You may have read some of my posts and already know that I went up to Yorkshire coming up for 5 years next january and underwent TPE amongst other surgery to repair damage of endo and I can honestly say it was the best thing I could ever have done for myself. I will never regret it. Surgeons I had seen before that we simply unable to understand the true nature of this disease or have the surgical skills necessary to cope with advanced endo that has takes such a hold.
I travelled up from London and so I know how you feel about being miles from home undergoing a lengthy op, coupled with the date of surgery. Have you asked him if there is any chance he could do it a week or two later? I understand that you would want to be with your family on the anniversary - equally they will want the best for you, as would your mum. Worth asking if the date can be changed if it will make you feel more peaceful but, if you can't change it, then I am sure it is right that you will be getting the best of help. It may even give your family some comfort at that time knowing that you are getting sorted. Would your family be able to come up to Elland and stay at a nearby hotel so that you can all still be together.
Feel free to PM me if you have any questions about the op or about staying up in Elland / preparation or aftercare etc.
It is a daunting time but amazing also to be getting this level of skill and help.
I just wanted to wish you the best of luck for your surgery at the end of October. I am having radical excision surgery with the same surgeon on the 30th, the day before you! It isn't the best time for me either as my Sister is visiting from New Zealand and I haven't seen her for years, but she understands that it's my health and it's priority.
Like you I am looking forward to getting my life back and escaping all the painfull symptons I've had for years.
Hi, may I ask how your surgery went? I am due to have the diagnostic lap next week with a view to tpe after & am really nervous so keen to find out as much as poss about other people's experience. I hope you are well & pain free xx
I am nearly a year on from my TPE. Honestly I can say I have never felt better since I was first diagnosed. I am running a 10k race next weekend and getting back to work, 2 things I promised myself I would do if I got better. Some days I even forget that I had this horrible disesase! Without trying to sound too complacent I am hoping that i continue to feel this good, but i know it's not guaranteed. I remind myself of what I had to go through to get to this point, years of tears, pain and infertility.
In my opinion and through my experiences of last year, I am convinced that a diagnostic lap is the best (and perhaps only) way to diagnose the endo in all its 4 satages. And, if necessary TPE surgery is the best way to remove it. It can be a long and complex surgery( mine was 7 hours) and you do need rest and patience from yourself, along with the understanding of family, friends and employers for you recovery to be a successful one. Of course it is important to have total confidence in the professionalism of your surgeon and to make sure that all you concerns, fears, questions are answered.
Everyones experiences and recovery will be different, so I wish you the best of luck with your diagnostic lap. My experience was and has been truly positive, so I wish the same for you.
PM me if you want details of what my diagnostic lap/ TPE surgery enatailed and recovery.
Did you have your surgeries? If so, i hope you are recovering well. I had my TPE at Elland hospital on Thursday and 3 days in I am recovering well, though tired. What a process to have to go through to gain back some normality in my life. I count my lucky stars the day I found my surgeon, he is an amazing man and truly dedicated to helping us endo ladies.
Hi BDAgirl, I had mine on Friday in Elland, but due to a complication with my ventrosuspension stitch and button, I've only just been allowed to go home. Glad to hear you're recovering well and hope it continues to go well for you xx
Wishing you a speedy recovery. I think we were in touch a few months ago when you were looking for this surgeon and I PM'd you his name. Sorry to hear you had some post op issues but hope all is ok now and you can get on with your LIFE!
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