Scared of what they'll find in Lap! - Endometriosis UK

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Scared of what they'll find in Lap!

Cat_face profile image
5 Replies

Hi ladies,

Am new here and this is my first post so just want to say hello!

Here's a bit of my story:

I'm 29 and have been having painful sex on and off for around the last 10 years sometimes with bleeding. In that time I've had 2 children and various 'odd' menstrual cycles - long, irregular, spotting, heavy, light and so on. I've tried many different contraceptives including the POP and combined pill, depo, coil and so on. Last year I started bleeding again after sex and getting severe cervical and pelvic pain, which continued for days after intercourse. One day I was gushing with blood and couldn't move after due to the pain. I went for a hysteroscopy a few weeks later and it was singularly the most awful experience of my life. It was absolute agony - I have never, ever, ever experienced pain like that, particularly around my cervix. The doctor wasn't particularly bothered, and didn't find anything but she shoved a coil up there for no apparent reason. I went back to the GP and got a second opinion referral. This time the consultant removed my coil as I wasn't having any problems with the pill and booked me in for a lap which I have in a months time.

I'm off the pill now as I am hypertensive so not using anything but the pelvic pain and bleeding has stopped although I do still get cervical pain during sex.

Have done some research and it does sound like I may have endo as I get left suprapubic 'tugging' pain, bloating, tiredness and so on.

Anyway just wanted to share and say hi :)

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5 Replies
hayls profile image
hayls

Hi

Just wanted to say hi and welcome. Sounds like you have been through a lot but glad you've now found a consultant that will help. Fingers crossed your lap will give you a diagnosis, whether endo or not but hopefully you'll then know what you're dealing with and can get some treatment. There are lots of tips on here for the lap which you might find helpful, things like peppermint tea for the gas pains after the lap etc - try using the search function

Hope everything goes well x

bonygirl1 profile image
bonygirl1

Hi, Just want to welcome you. It does sound you have been through a lot, keep reading and posting on here you get lots of great advice. Good luck for your lap in a months time and don't forget to keep us posted. Take care X

cupcakegirl profile image
cupcakegirl

Try not to worry about what will or won't be found - it can be stressful since we have no way of knowing what's going on until surgery, but try to focus on the positives (hopefully you'll get some answers).

It sounds to me like you've had a lot of time in recent years where you've been either pregnant, maybe breastfeeding (?) or on some form of pill. This should have stopped any Endo from becoming very severe, as these are all things that are supposed to improve the disease. If you've had two babies without any complications, that also suggests that things aren't too badly damaged. Having said all that, some women have unusual cases but, in most cases, those things should mean that the disease should have been limited to some degree.

It's probably a good thing that you're not on an hormonal treatment for the lap as this can skew the results / make it harder to see (especially if you're taking the pill back to back / having no periods).

It does sound like you have some Endo symptoms, but flooding with blood after sex seems unusual - did they test for infection? Apologies for the personal question but was it old, brown blood or fresh red blood?

(I had no idea until after my Endo diagnosis that periods are supposed to be red rather than black/brown - the first I had fresh bleeding I booked an emergency GP appt as I thought something was really wrong!)

I'm just trying to figure out, if it was Endo causing that, exactly how could it be happening - the blood from Endo tends to pool in your pelvis, unable to escape. I would have thouht this more likely to be a cervical erosion, which are common when on the pill). This is something I would ask the gynae about.

If you had horrid bleeding after the procedure, it may well have been caused by the coil, which is why it's now stopped. I had one put in last year and I had seven months of daily bleeding and contractions - it took 11 month's to get it out as the gynae cut the strings too short and I find internals excruciating too, I can barely tolerate a small speculum, but when they open it I feel like I'm being ripped apart. The whole experience was quite traumatic - I would rather have a lap than a pelvic any day.

Laps can be deceiving as the incisions are tiny but your insides can be very damaged afterwards - especially if they cut or burn away the Endo and adhesions, which they may not do on the first op if it's only diagnostic. I would ask whether they plan to treat whatever they find - in an ideal world, they would otherwise you'll need another op, more adhesions etc

Often they'll say you need a week off after a lap but recovery rates vary massively - even minor laps have taken me three or more weeks to recover, but everyone is different.

On thing they don't warn you about enough is the pain from the gas yet pump into your belly - I was told it would be like mild period cramps, so when I had crushing chest pain and it felt like my arm was being pulled off, I thought I was having a heart attack! It can be nasty but it's much easier when you know it's coming - it usually goes in a couple of days but it lasted five days after my most recent lap (fifth). I couldn't lie down, I was sleeping sitting up, it was horrid - I suspect the gynae barely pushed out any gas, so of your gynae is approachable, ask him to make a special effort to get rid of as much as possible.

Lots of things help - walking round, peppermint tea, wind settlers tablets, fizzy drinks that encourage burping (sorry!) and eventually your body will absorb it.

One other thing I wish I'd been warned about - they insert something into your womb via your vagina so they can move it out of the way and look around. This usually causes vaginal bleeding, and you'll usually wake up with a sanitary towel unceremoniously shoved between your legs - I wasn't expecting it and for some reason this made me really uncomfortable the first time. After that, when I knew it was coming, it wasn't so bad. Take some towels yourself as the hospital ones are huge!

Your belly will probably be swollen afterwards so take very loose trousers or a loose comfy dress to go home in, and some granny pants - plus shoes you don't have to lace and can slip on, like flip flops. Also a pillow to put over your tummy on the ride home helps a lot.

Hope that helps a bit - I think it's easier when you know what's coming!

x

Cat_face profile image
Cat_face

Hi ladies, thanks for all the support. It means a lot to know it's out there!

Cupcakegirl, I've realised that my symptoms vary depending on what hormonal contraceptive I am on. It was particularly bad when on the POP.

I don't have a cervical erosion - my GP thought I did but 2 consultants have said I definitely don't despite my symptoms pointing towards that which would explain a lot. The heavy bleed I had was very, very dark blood, very old and viscous. It was before i had the coil put in and was postcoital. I bled a lot after the coil was implanted but that was normal. I have had 2 more bleeds like that since, one after I had the coil out and one after stopping the pill although these two are probably hormone related rather than trauma like the first.

The lap is diagnostic but if my consultant finds anything he will operate if its fairly minor. He has insisted he does the surgery which has led to a 6 month wait for it! Urgh!

Thank you so much for the tips, I probably wouldn't have thought about granny pants and comfy shoes. I would have rocked up in a thong and heels! Ha!

X

Cat_face profile image
Cat_face

Forgot to say, definitely no infection or pre-cancerous/cancerous cells as have been checked numerous times for this. Also ultrasound was clear for polyps/ cysts. So the mystery continues.... Interestingly I've had quite a bit of tugging pain since I've been off the pill yesterday and today. Am probably ovulating at the moment so may have to dig out the codeine :(

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