I want to share my experiences with the wonderful Prof Marc Possover in Zurich and Peter Barton-Smith in London. They have changed my life!
I live in the West of Ireland and was diagnosed by laparoscopy with mild/moderate endometriosis at the age of 22, 8 years after the onset of my cyclical, severe pelvic pain. At the time, I was totally immobilised by period pains for a few days each month. Over the years, things worsened and I had many interventions to help with my pelvic pain, but there was never much endometriosis to be found and I never had any sustained relief (except for 4 months while on a chemical menopause, and for about a year after the birth of each of our daughters while I was still breastfeeding and my periods stayed away).
It got to the stage where for at least half the month I would be immobilised by the pain (for about five days around ovulation and ten days around menstruation) and I had to give up work and most of my social life. I couldn’t make plans, as I never knew when I would be able to walk due to the severity of the pain. When possible, I tried to schedule appointments / social engagements in the mornings, when there was a much better chance I could attend! I couldn’t even book a hair appointment in advance, I’d have to wait until I was having a ‘good day’ and hope someone could squeeze me in.
After my 6th laparoscopy, at the age of 32, I was told by a gynaecologist there was nothing more that could be done, except pain management. But pain management was not working, and I wasn’t happy to accept this diagnosis, particularly as my children were getting older and were becoming increasingly restricted by my physical limitations. This is when I started to do more research and found the wonderful online resource, Nancy’s Nook. After consulting this forum, and on the back of advice from Kathleen King from the Endometriosis Association of Ireland, I travelled from Ireland to see Peter Barton-Smith in London, in September 2018.
We found Mr Barton-Smith to be very professional, efficient and understanding. You really get the impression he cares about his patients (he has stayed in touch with me via email, since then, checking my progress). After my hour long consultation, he was instantly able to make sense of all my pains and symptoms. He advised me that the source of my pain was probably not, and probably never had been, endometriosis. He made a preliminary diagnosis based on my detailed history, a physical examination and ultrasound scans, that I had enlarged veins compressing my sacral plexus nerve. This was a revelation, and finally all my symptoms made sense, after 24 years! This took a while to sink in as up to this point ‘endo’ was such a big part of my story. Whenever people saw me crippled with pain, I always replied ‘that’s just my endo, don’t worry, I’m fine’. I now know that the reason the pains were cyclical, peaked at the onset of my period, and were made worse by physical exertion was because at these times there was increased blood running through these veins, putting more pressure on the nerve.
Peter Barton-Smith referred be to Prof Marc Possover in Switzerland, who is the leading expert in pelvic nerve surgery (neuropelveology) whom I went to see in November 2018. We also found him to be extremely professional, sympathetic and understanding. He took the time to answer all of our questions and was able to confirm the diagnosis of venal entrapment of the sacral plexus nerve after a couple of additional tests to rule out other possible causes. After organising the logistics and financing (my health insurance, after quite a bit of wrangling, agreed to cover the cost of the surgery) we scheduled surgery for February 2019. Prof Possover is such an amazing person who has dedicated his entire life to neuropelveology. The surgery, performed via laparoscopy, involved the removal of several enlarged veins that were basically strangling my nerve. He found no signs of active endometriosis. This was my 7th laparoscopy and I noticed an immediate difference post-surgery, I felt so much better than normal. Prof Possover visited me twice a day for the 3 days I remained in hospital post-surgery and took the time to listen to us and discuss things. I feel so privileged to have been treated by this man. The hospital itself is more like a luxury hotel (and not excessively expensive as he uses the services of a hospital owned by a group of doctors, which keeps the cost much lower than other Swiss hospitals) and Zurich is a beautiful city to visit. Prof Possover has an excellent support team who can help with all logistical details.
My recovery post-surgery went exactly as predicted. Prof Possover told me the pain would increase for 6 months and would then start to improve. This was a natural reaction while the nerves settle. He started me on the pain-killer Lyrica and told me to increase my dose weekly, as needed. I ended up on 550mg of Lyrica daily and 6.5 months post-surgery I started to feel better. It is amazing. It is like winning the lottery! I am 9.5 months post-surgery now and I can’t describe how much my life has changed. I no longer need pain killers. I can dance with my children now and make plans with confidence that I won’t have to cancel them last minute. I can push the trolley around the supermarket and come home, unpack the groceries and carry on my day, as opposed to retiring to the bed/sofa for the rest of the day as I had to do before (and this was only possible on good days!).
I was, as an unfortunate coincidence, diagnosed with Multiple Sclerosis 3 months post-surgery which was a bit of a shock. My neurologist thinks I have had the condition for a few years, but I never paid attention to the symptoms with all that was going on with my pelvic pain. I am been treated for MS now, but even with this, I still feel better, more physically confident and more empowered than I have in well over a decade, all thanks to these wonderful physicians.
I hope this will be of use to someone. I know this story differs from most, being that the direct cause of my pain turned out not to be endometriosis. I do know Prof Possover treats a lot of patients with endometriosis on the same nerves as he released for me. He told us while we were chatting one day, when he first performed this surgery to remove endometriosis from the sacral plexus nerve, over a decade ago, he was told he would only have a couple of cases in his lifetime. He had four the previous Friday alone! Endometriosis affecting nerves in the pelvic region (which is outside the area usually investigated by gynaecology) is quite common, but goes undiagnosed because of lack of awareness and expertise. Additionally, there are currently less than 10 surgeons in the world qualified to do this surgery due to high skill and experiences necessary, and the potential risky nature of the surgery if undertaken by somebody that is not extremely competent and highly-trained.
Some practical notes:
Surgery at the Possover International Medical Centre is not covered by the EU Treatment Abroad Scheme (even though Switzerland is generally included).
The initial consultation cost me €1,584, plus the travel to Zurich.
The surgery costs roughly €12,000 – €20,000 depending on the duration. My surgery only lasted 1 hour, so was about €12,000, including my 3 nights in the hospital. Though, as with any surgery, there is always the risk of complications and a more expensive surgery.
I have health insurance and they agreed to pay for the surgery. I had to get prior approval upon referral from an Irish based consultant. We had to pay for the surgery ourselves and the insurer refunded us the cost.
We will be able to get some money back on the travel costs with our MED 1 tax return.
We stayed in a hotel close to the hospital the night before surgery, and the night after discharge.
My husband stayed in the hotel for the 5 nights. We were able to fly back to Ireland then.
Post-surgery I filled out a form once a month for the first six months to send to Prof Possover’s team. He checks this and if there is anything he is unhappy with they will arrange a Skype call or amend the instructions. I did not need this. I had a few extra queries come up from time to time and his team always relayed this to Prof Possover and got back to me with his feedback very quickly. I will send another up-to-date form to Prof Possover at 12 months post-surgery.
Prof Possover’s Website https://www.possover.com/en/marc-possover
Mr Peter Barton Smith’s Website https://www.endometriosisclinic.co.uk/mr-peter-barton-smith
Great article. I wonder if I could have the same thing. I just wish Laura had said where the pain was that was stopping her from being able to walk and if the pain was on both sides. Also was it just normal ultra sound scans that Mr Barton-Smith used to diagnose the enlarged vein? If Laura reads this and you don’t mind chatting a bit my Twitter name is @flutterflylu we could DM. 💛
Thank you so much for sharing your story. These are life saving informations. Can you tell me more about your symptoms, where was the lsin, only pelvis or legs?
This is Laura here. Thanks for your comments.
Apologies for being unspecific about the symptoms. It’s such a long story, I wasn’t sure how much to include..
I hope this makes it clearer:
My pain was mostly focussed in a very specific point on my lower right abdomen. It then radiated across my lower back and the rest of my abdomen. I also experienced sciatica in my right leg. When the pain was bad I was hypersensitive to any touch on my abdomen or lower back. This would then cause waves of cramping. The only relief would be to lie as still as possible and wait for it to subside.
I found it very difficult to tolerate any sort of internal examination, even pelvic ultrasounds. I had pain after bowel movements. I suffered from IBS which aggravated the pain.
With regards to Peter Barton-Smith’s diagnosis, as part of his consultation he sends you first to a specialised ultrasound clinic near his consultation rooms. I had a trans-vaginal ultrasound there and it was from these images he was able to spot the enlarged veins.
I should note I have had pelvic MRI’s with dye and countless ultrasounds previously and no one had ever spotted anything. I guess no one was looking for the right thing!
This is an incredible story and incredibly like my 15 yr old daughters story. She now has been in a wheelchair for 20 months due to pelvic pain. She was officially diagnosed with endometriosis via laparoscopy at 13 and had this excised feb this year by another specialist age 14. However her pelvic pain is so bad it stops her from standing on her own and has lost all independence. Prior to excision she could not tolerate even the lightest touch on her skin on lower pelvis and lower back which has gone since excision which is great. However her life is so restricted as cannot lead a independent life as a child should. This all started at age 11 but no one believed us. She has not been able to go out of the house on her own since August 2016. Pls if you read this I am interested to learn/find out more from you as Marc Possover is on my radar for help. Our email is email@example.com
Thank you so much for giving us a glimmer of hope. Pain teams dont help and want to refer her to a rehab centre but I don’t think it’s the right plan.
Thank you again
Hi i saw your comment on the fb page of Dr. Possover. I was wondering if you had an operation on the nerve concerning endometriose? Which nerve? I may also have a surgery in Zürich. Did you had a lot of pain afterworth? Thanks for your feedback!
Thank you for sharing your story! I was operated on endometriosis on the obturator nerve of the leg in the pelvic region, in november 2018. The surgery was in Romania and it was successful. unfortunately a few months ago, discovered endometriosis on the nerve of the foot outside the pelvis. I have read about dr. Marc Possover and I would like to ask him for this problem. I hope he can help me.
Bonsoir vous avez de la chance moi j’habite en France et ben cette qualité je suis allé me rembourses pas je suis pas bien je ne bouge pas de mon lit je marche avec des béquilles je prend De la morphine Jour et nuit et même avec ça j’ai toujours mal je ne dors plus je ne mange plus
This article has been so helpful. I saw Mr Barton Smith yesterday and he has said he wants to refer me to Prof Possover based on my history, symptoms and finding enlarged vessels on the right side of my pelvis. I would really like to chat to you a bit more about it if you’d be willing? Thank you so much. Anna
Hi Anna, apologies for the delay in responding to your message. If you would still like to discuss anything you can contact me on laurabaird@Hotmail.com
I found this story so helpful. I recently had a similar surgery in May with a wonderful surgeon who trained with Dr. Possover. I had a hysterectomy due to large fibroids, endometrial excision, and the removals of enlarged veins that were compressing my L sacral plexus. I have had pelvic pain for almost 30 years (I’m 48) and in the last year in had progressed to include severe pelvic floor pain, L sciatica, and back pain. I had to leave my job. I am currently 2 months out from surgery and the recovery is so difficult. I have confidence that the nerves will recover, but right now I am in a lot of pain and on some days it is difficult to believe it will heal in time. If anyone out there has had a similar surgery and would like to chat, please contact me at firstname.lastname@example.org. I could use all the community and encouragement I can get!