Hi all, I have been in this forum a while whilst under investigation for my symptoms.
I fought for a referral to gynaecologist who was extremely unhelpful initially, and quite clearly hadn’t read my notes.
After going back and forth in my consultation he decided to schedule the lap, I’m waiting on a date but told it could be next month.
To my knowledge, he’s not a specialist, I’ve not been put in contact with any specialist centres nor an endo nurse - which is what I often read about here.
I’m a little confused as it’s my understanding he will go in, explore and treat if necessary, right?
Or is the initial surgery just a diagnostic, then I’ll need to have further surgery with a specialist / multi disciplinary team?
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During my laparoscopy which was my first, they found endometriosis and removed what they could. They made four incisions - one on each side of my tummy, one in my belly button, and one below. I just went through the NHS though, might be different if you're going through a specialist?
If he is in anyway professional at all he will send you for a scan with a really good professional sonographer who specialises in this area to see exatcly what the problem is, where the worst of it is etc. It is super important you get a good gynae right from the off. I was reffered to a guy who didn't know what he was doing and just burned some of the endo off leaving most in as he wasn't a specialist endo gynae. This meant my pain came back really quickly and I need another operation very soon. It's back again now and most of the specialists I have spoken to won't touch another op as there was so much scarring and damage from the other two.
Please , please take you time, do you reserach and if neccsaary pay for someone good otherwise you will go through a lot of pain and stress at the op and have very little improvement. Don't just go to any old gynae who has no specialist endo knowledge.
Hi, I have my first surgery tomorrow. I was diagnosed 3 weeks ago via an ultrasound.I have been told by my consultant that the laparoscopy tomorrow will help them understand the extent of what’s going on and if they are able to while they’re there they will begin to treat.
Hi, have been debating all day whether to come back and update as still dealing with some of the shock of what they found and don’t want to scare. But in the name of support and openness I’ve decided to update.My surgery went really well, I’ve got three cuts, one by belly button and one on either side. At the moment I’m surprised by how comfortable I am. Unfortunately for me when they got in there it was a lot worse than was expected. The cyst on my right ovary was 3cm rather than the 1 suggested. My right ovary was stuck to everything else inside and the back on my uterus was covered. She has removed the cyst, freed my ovary and cleared what she could off the back. Although she made it clear it will be back with time. The hardest part for me was while they were there they tried to put dye through my Fallopian tubes and am devastated to report that they are completely blocked so the likelihood of me conceiving naturally is next to none.
Currently going through the what if they had listened to me sooner turmoil and when I’ve got my head round that I will explore to see if there are any other options available to me.
Sorry for the long reply and I hope you have a much nicer result than me. Best of luck x
Hi Gemma, pleased to hear that you’re feeling ok and not in too much pain. But also really sorry to hear the bad news, I can’t imagine how you’re feeling emotionally.
Thanks for sharing, sending lots of love and wishing you a speedy recovery.
HiI initially went for laparoscopy to treat a cyst on my ovary. By the time I had the surgery it had burst. But once the we’re in they found I had also got endometriosis that was everywhere it even stuck my ovary to my womb 😂. They treated in the same surgery and removed it all. They won’t put you through the same surgery twice. He will treat there and then.
My consultant was just a general gynaecologist he didn’t specialise in endometriosis and I didn’t have a endo nurse either. My surgeon even helped a lady who had bladder problems. So I wouldn’t worry, they know what they are doing.
Good luck for your surgery and a speedy recovery xx
HiMy gynae had a very good reputation in my area (south East) and also specialized in Endometriosis. This is your body so you need to be comfortable that you're getting the best possible care. Endo can be pretty tricky to find and remove so you need to have confidence in them. I was always told a lap is the only way to get a proper view of what is going on so scan appointments just really prolong things (in my experience). I'd suggest doing some more research to find someone who does specialize in Endo but push to be seen as quickly as you can (pay private if you can). My endo got worse at quite a shocking rate so time is not on your side, especially if you're planning to have to have kids. Good luck!
So sorry to hear you’re having to go through this.
So when I had my first gyno appointment a month or so ago she explained that due to my endo causing Hydrosalpinx that I would also need laparoscopic surgery and I have been put on a waiting list.
My gyno said that she could do the surgery herself but it would just be diagnostic so has therefore referred me to fertility specialists and that way when I do eventually get the surgery they will also be able to treat what they can whilst they’re in there.
By the sounds of it your gynaecologist will only be going in and diagnosing you and then I presume you will then be sent for another surgery to treat whatever is in there.
No! The specialist Endo centres and multidisciplinary teams and Endo nurses are for people with extensive disease that effects major organs! If at your lap you are found to be such a patient with extensive deeply infiltrating disease you will then be referred to tertiary care! If not, then you won’t! All gyneas know what Endo is and how to treat it!.. They just legally cannot treat complex cases!
hi all, I had my lap yesterday and at home recovering,
All in all quite an unpleasant experience and feel no further forward.
My gynae didn’t come to see me after surgery, however as I was struggling to pee, I was still in recovery when he popped his head in and I asked him if he could update me- the nurse said she didn’t have my notes..
He found a spot of endo on my bladder (3 years of excruciating bladder pain) and said he’s pretty sure it’s endo but needs to send it for a biopsy. He’s removed it.
Said everything surface level looks fine but there’s a chance it could be deeper, he doesn’t know 😑.
Second experience with this guy and he just keeps asking me if my family is complete - like his option is to remove my reproductive system. I’m 33 without kids (yet) FYI.
I don’t understand why he hadn’t looked in the places in which my pain is most severe - lower back, pelvis, around my butt, and pain when I’m having intercourse.
Im bleeding a little, some clots. Assuming this is just a side effect? I have no discharge paper and no idea on next steps. They didn’t even give me any pain relief and just said OTC 😑
I’m just feeling really lost and needed to vent, so sorry for the super long post!
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