HELP!!! Lap clear for endo so what is hap... - Endometriosis UK

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HELP!!! Lap clear for endo so what is happening

Ambs2018
Ambs2018

Hi,

I’m looking for a bit of advice! Around two years ago I went in to urine retention for no known reason and apparently it is unusual for a 19 year old to go in to retention, fast forward a year and it happens again but after doing a cystoscopy they still don’t know why. However when they asked about other symptoms they decided I need to see a gynae doctor. First appointment to see gynae and was unable to have internal exam done due to pain and symptoms such as extremely heavy periods, excruciating period pain, painful sex, kidney pain, dizziness, extreme tiredness, severe bloating (the list goes on) they decided to do a lap unfortunately/fortunately that came back clear. I am at my wits end as GP doesn’t know how to support me, Gynae have discharged me but yet I feel 90 and 9 months pregnant!! My life is pretty much constant pain and horrid mood swings and many hospital stays due to pain and symptoms and trying to live my life normally is proving difficult. I am considering going private as I want an end to this or some kind of relief and I would appreciate any advice/support/feedback. Thank you!

18 Replies
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Hey, did you see a general gynae or did an endo specialist do the surgery? Sometimes general gynaes can miss it during surgery x

Hello, I saw a general gynae and thats what I’m worried about and now all they are telling me is that I need to try contraception which I was already doing and is not really making a difference x

My endometriosis was missed on my first lap. Had another 3 years later and I was diagnosed. You can ask for a second opinion from your GP, so get him/her to refer you to another consultant. Then maybe opt to go to a bsge centre (have a Google to see one that's local to you on NHS), they may be able to offer you more specialised advice :) good luck

Minchoo
Minchoo
in reply to Ilogn

I had a lap in 2015 turned out to be a fibroid. But I developed Endo in 2016. So I would ask for a endo specialist at a BSGE Center (if you are in the U.K.) also save up and get your eggs frozen. Endo can effect your ovaries. I wish I was diagnosed earlier and treated earlier. Would have saved a lot of heart ache.

Ambs2018
Ambs2018
in reply to Minchoo

I’ve found a consultant privately and reading her profile she sounds like she would be really good at helping to get a diagnosis but just worried about spending a lot of money and not getting anywhere :( thank you for your comment!

Ambs2018
Ambs2018
in reply to Ilogn

Its just frustrating going through all the pain and discomfort and they don’t appear to take you seriously 😫 I’ve asked and they were reluctant to do refer the first time so don’t think it will work!! Thank you for your comment ☺️

As others have said endo can get missed on a lap. You need to see someone on the BSGE list. Also, an MRI usually shows endo and should be used before a lap as it is less invasive.

Ambs2018
Ambs2018
in reply to NW248

My GPs are very reluctant at referring so don’t think they would even consider referring me on to see someone on the BSGE list! They won’t do an MRI unless they feel there is a need for it so thats also out of the equation. Thank you for your comment.

fern123
fern123
in reply to Ambs2018

hi everyone has the option of a 2nd opinion on the nhs so stay strong and insist on a referral to bsge, this is what I had to do but worth the effort in the end.

It cost me £200 to see someone on the BSGE list privately. They then referred me for and MRI that was done on the NHS. Best £200 I've ever spent. But just insist that your GP refers you to someone on the list or for an MRI. Make sure they know that a lap can miss endo if it is in the Pouch of Douglas (which it often is) and that an MRI will show it up.

Ambs2018
Ambs2018
in reply to NW248

I’ve just booked my private appointment and I’m just hoping this goes well. Whenever I have an ultrasound they say I have fluid around my Pouch of Douglas could that be related to endo? Thanks

NW248
NW248
in reply to Ambs2018

It is possible that the fluid is related to endo, it seems the body responds to endo as if it is inflammation and generates fluid around it as a response. Although I'm not 100% sure about that.

As for booking with a private endo specialist. Look at the list, find an NHS centre and then search for the consultant's name on the internet. You'll find a listing for their private practice usually based in the same area. So you then book a private consultation but ask them to put you on their NHS list for any further diagnosis (MRI usually) and the operation.

Hey! I am really sorry you are suffering hun.

Just a word of warning please what ever you do if you are going down the private route please see an BGSE accredited consultant. I a few years ago in haste didn't do this, did my own research and thought the consultant I found was an endo specialist from the info on their website. That consultant caused so much damage to me and left me in a worst state than I was pre op, when I went back to the consultant to say I was in a lot of pain they said there was nothing much more they could do and that they specialise more in fertility?!

I now have an amazing BGSE accredited surgeon who spent most of my last op clearing the mess left by last one.

Good luck hun!

Ambs2018
Ambs2018
in reply to MMB89

Hello, thank you for your comment ☺️How do you book privately as the ones that are near me are at NHS hospitals🙈 Oh god I’m sorry that you had to go through that and I’ll definitely do my research before going! I’m glad that you appear on the right track! Thank you x

MMB89
MMB89
in reply to Ambs2018

Hey!

Here is how you find your nearest BGSE center: bsge.org.uk/endometriosis-c.... They are accredited endo centres within NHS hospitals so my new consultant is at a BGSE centre on the NHS. Most NHS hospitals also have a private wing/ward or if you google a BGSE listed consultant you will most likely find where they practice privately and the contact info on how to book with them.

Do try to push your GP for a second opinion though and ideally to a BGSE centre. I have had far better care under the NHS than privately in the past and such an awful experience privately that I wouldn't wish anyone to go through what I did.

Do you attend of the endo UK's support groups? I am a changed woman since joining my local group and I also attend their online group as well sometimes. People able to talk to people in the same position has been so empowering.

Best wishes and good luck hun!!

There's a lot of us in the same boat unfortunately. I've been referred to a specialist now after a clear lap. My doctor has been good in referring me again and also writing to the consultant who did it to find where he checked. Also I have sent forms off for my photographs from the lap, might be worth getting them x

It is and its a shame we have to go through it. Thats good that you are getting referred! Ooh I didn’t know you could request your photographs from the lap! X

I printed forms from my hospital and have sent them to the access department. They do cost but I figured worth every penny.

Keep fighting, I'm sitting here in absolute agony and bleeding from my bottom on my period. It's not normal. Let me know how you get on xx

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