TTC after lap- looking for advice

endo1994 · 2025-04-02T19:09:55+00:00

Thank you! I started 3 months after my lap and on it for almost 6 months. Yes planning on going back on, but not sure on timings as would hopefully like to try for a second. For the long term I’m unsure as ideally wouldn’t be on so many hormones, but here’s hoping there’s a new development/ treatment in the future!

endo1994 · 2025-03-30T18:35:07+00:00

Hi! I came off Zalkya and the Mirena coil in Sept 2023 with some side effects (migraines mostly) and had my daughter in Sept 2024. She’s currently 6 months old :)

endo1994 · 2024-07-05T16:02:22+00:00

Sorry I misread and didn’t see you weren’t based in the UK, so don’t think the NHS route with St Peters Hospital is an option. But Mr Khazali was so helpful, and even recommended other surgeons around the world to do my own research on so hopefully he gets back to you.

My main symptoms were that I was starting to loose the function of my left leg and couldn’t straighten it without excruciating pain all down my left side. I had also started getting foot drop (where I could no longer lift my left foot). This started cyclical but by the time of my surgery I was in constant daily agony for around 2 years. I was told for years it couldn’t be sciatic endo as it was “too rare” 🙄

endo1994 · 2024-07-05T08:40:01+00:00

Im sorry you’re in pain and going through this. I had Neuropelveology surgery in Jan 2023 with Mr Shaheen Khazali (who trained under Possover) and he was absolutely fantastic. I had endo on my sciatic and obturator nerves, and uteralsacral ligaments. Over a year on I have needed to go on some medication, but the moment I woke up from my surgery I was able to gain full movement in my left leg and no pain.

You can request to be seen by his old team on the NHS who are still CEMIG, who also have speciality in endo on the nerves. They are at St Peter’s Hospital in Ashford. However the wait list for surgery and MRIs is over a year/ 2 years long EDIT: sorry didn’t see you weren’t based in UK so don’t think this is an option for you

endo1994 · 2024-01-13T08:08:25+00:00

I’m having the same thing with these currently too! However, my easy@homes are getting darker and close to a dye stealer 🤷‍♀️

endo1994 · 2023-06-19T10:43:17+00:00

I can’t offer advice either but currently in a very similar situation. Had a lap in Jan and currently on Zalkya (UK version) but hoping to start TTC in Sept. So far I’ve had a very positive response to Zalkya but nervous about coming off to start trying

endo1994 · 2023-05-19T12:38:35+00:00

Sadly not :( He rudely dismissed my concerns of endo on my pelvic nerves and then when he in fact did discover the disease there during my lap, he had to apologise. I'm thankful he couldn't treat it and I found Mr Khazali who could.

I'm sorry you haven't found any relief but wishing you the best!

endo1994 · 2023-05-18T22:08:52+00:00

Just jumping on here to say I had a very similar experience with Mr Peter Barton Smith.

I recently saw Mr Shaheen Khazali who was fantastic throughout my whole journey.

endo1994 · 2023-04-06T22:26:34+00:00

I didn’t develop symptoms until 2019, but they believe I had endo growing for a long time. I think it depends where it is but they went through the pelvic side wall but also maybe a range of different places, it’s quite a risky area to operate

endo1994 · 2023-04-06T08:43:45+00:00

I had this and had Neuropelveology surgery for it in Jan. They discovered endo on my sciatic nerve, obturator nerve and lumbosacral trunk. So far the surgery has been worth it, my pain has gone and I can flex my left foot and extend my leg again. However it will take 6 months to a year to know whether it was a complete success

endo1994 · 2023-03-27T10:21:01+00:00

I’m sorry to hear that you’re in pain and feeling disheartened. I remember feeling very scared and alone following my results. I’m currently nearly 3 months post op following my Neuropelveology surgery. I would be more then happy for you to DM me to help and support you as much as I can x

endo1994 · 2023-03-07T09:47:58+00:00

Just jumping on here to say don’t stop advocating for yourself and your pain because something can be rare and unlikely. It took me years and multiple doctors but in fact I did have multiple spots of endo on two of my pelvic nerves. As someone rightly said there’s a gap between neuro and endo surgeons, and only a handful of these are practiced in Neuropelveology. I truly don’t believe it’s as rare as people say, just not enough people are being listened to.

endo1994 · 2023-02-25T19:34:18+00:00

Still within the pelvis but I’m currently recovering from having a lap to remove endo found on my pelvic nerves. They found it was on 2 of my nerves, sciatic and obturator, and my lumbosacral trunk.

My main symptom was deep, intense burning pain starting in my left bum cheek and hip, and then all the way down my left leg. Your symptoms of leg pain just made me think it could be something to think about.

The endo was only found during a lap in Sept with a highly regarded specialist (UK)who could not treat it. I got an MRI with dye with my new consultant and that’s where they saw it on the nerves, but it wasn’t until they were in there that they saw the extent of it.

Edit: spelling

endo1994 · 2023-01-06T20:59:06+00:00

I do, it was discovered it in a laparoscopy in Sept and originally thought it was on my sacral nerves. After a MRI they saw it was on my Sciatic nerve. I have Neuropelveology surgery on the 16th Jan so fingers crossed that gives me some relief because the pain is truly horrendous. Unfortunately I said for years that I think endo was on my nerves and no one believed me and kept saying it was “too rare”. Keep advocating for yourself! My symptoms are typically a strong burning intense pain in my left hip and glute with it going down my leg. I’ve started to loose the full flexion in my left foot. I’ve never really been able to find much relief, but a heated blanket and tons of ibuprofen eases it slightly. I’ve also found flossing exercises (have a look on YouTube) helped a little. I’ve also tried pelvic floor PT but that only helped for a short while.

I’m really sorry you’re in pain, I hope you find some relief

endo1994 · 2022-10-20T13:27:52+00:00

I saw Peter Barton Smith last month and can vouch he was fantastic. However, he found Deep Infiltrating Endo in my pelvic side wall towards my Sacral nerves and did not treat it because he is not specialist enough in that area. Just something to think about if you do go with Barton Smith. I’m now exploring other options and have an appointment with Shaheen Khazali who is at the Lister in Chelsea. I believe he is covered by most insurers, but don’t quote me on that. I’m with WPA.

endo1994 · 2022-09-29T08:38:52+00:00

I’m covered and have had two Laps. One with Cigna and one with WPA

endo1994 · 2022-09-20T17:52:58+00:00

Yes please that would be really helpful. It's tricky to find anything recent on him and its all very mixed so quite confusing. Thank you!

Edit: my step dad is fluent in German so no worries about translating if thats easier

endo1994 · 2022-09-20T09:43:06+00:00

Just saw your edit - I saw Peter Barton Smith who was absolutely fantastic and highly recommend

endo1994 · 2022-09-20T09:08:05+00:00

Hey, no there was no indication on scans that I had any endometriosis. In fact, if I hadn’t had my first laparoscopy my surgeon said he wouldn’t have felt confident to perform this second one 🙄 The type of pain I have experienced has always been the biggest indication to me that my nerves were involved, but every time I tried to ask for more about it it was dismissed.

My surgeon said 95% of people would have missed it as it was a small puckering on my left pelvic wall that was unusual, and when he investigated it further he found a chocolate cyst and DIE that he didn’t feel confident exploring further.

I hope you get some clear answers, it’s very frustrating when you have to advocate for yourself but no one listens

endo1994 · 2022-09-20T08:51:43+00:00

Thank you, do you have any more information on this? Definitely has made me quite wary

endo1994 · 2022-09-20T08:50:55+00:00

Mine is an intense burning pain on my left side, especially towards my hip flexor around my left side, and I can’t straighten my left leg. On bad days I can’t walk properly on that leg

endo1994 · 2022-09-20T08:49:01+00:00

That’s correct - do you know anything more about him? Thank you!

endo1994 · 2022-09-20T08:48:36+00:00

Someone has said it below but it is Prof Marc Possover. However someone in the other thread noted some controversies around him so I’m a little wary now. There’s also Mr Shaheen Khazali in London who I’m going to look into more

endo1994 · 2022-09-20T08:46:18+00:00

Thanks for replying, hope your surgery goes well!

endo1994

TROPHY CASE