Endometriosis excision surgery

[Lauralovesevie18]

Hi girls I had excision of recto vaginal endometriosis ( which is the most severe) nearly 4 weeks ago now. This also involved a bowel rescetion as I had endometriosis adhesions everywhere. I'm getting abit worried as I'm nearly 4 weeks on and I'm still getting pains when I walk in my pelvis and pains going down my legs. How I usually would when I had endo flares. It's mainly pain in lower abdomen and lower back pressure.

Before the surgery I was put on prostap to reduce size of the nodule I had ( which puts you into the menopause ) this was a 3 month injection which has now worn off but I'm still getting severe hot flushes.

The surgeon also inserted a mirena coil during the surgery but I'm getting bleeding still and like this horrible water bloody discharge.

Just wanted to see if any of you had the same feeling 4 weeks on. Literally went to the shops to do a food shop which I would usually be able to do but I'm walking along now at a snails pace because I'm in pain in my pelvis and legs. Should I be pain free by now? Or is this normal?

I've tried calling my nurse but she never answers and I haven't got a follow up for another 3 months .

Feeling now that this surgery hasn't worked and it was a waste of time 😭

[Cupcake1617]

Hey - I’m 6 weeks post op & a few months since my last Prostap injection. I was still having similar problems to you around 5 weeks on - this week I’ve kinda given up too much as I know doing too much (even if it’s little things, dishwasher, hoovering, shopping) will cause lots of pain.

Keep positive and resting - hope your pain improves soon x

[Lauralovesevie18 in reply to Cupcake1617]

It's hard isn't it when you have so much to do and your used to doing things and being independent and now you can't even walk 100 yards without being in pain ☹️

What's your next step now ?

[Cupcake1617 in reply to Lauralovesevie18]

Indeed. I learnt to kick back and let others do it in the end. I see the consultant this week to find out what’s what. How about yours?

[Peren]

Hello. I had similar op to remove revtovaginal endo, endo of bowel and bladder, tubes, etc etc etc back in April. I still get pain in my pelvis and down my legs. The surgeon said it takes 3-6 months to feel the benefit as internal healing takes way longer than external. I’ve never Had a coil so can’t comment on that but if you’re still bleeding it’s probbaly worth talking to someone. Hope you feel better x

[Lauralovesevie18 in reply to Peren]

Hi Peren thank you for your reply . It's just so frustrating especially when you hear from other people that they have recovered after like 2 weeks 🙈 I keep thinking that something's happened internally.

I also had to have stents put into my kidneys because of the surgery. I've been through a lot the past two months with three different surgeries to do with the endo so maybe I just need to give my body a break.

It's so tough isn't it living like this with the disease. I know there's worse people off than me but sometimes you can only see what's in front of you . It's hard to look after your children's hold down relationship etc.

Any tips on how to ease the pain other thank taking meds?

How you feeling since your operation?

[Peren in reply to Lauralovesevie18]

I’m generally quite a positive person but endo has pushed me to the edge many times.

After this op I have had accupuncture with electrodes (so they put electric current through the acupuncture needles) which was amazing for nerve pain and helping with scarring.

Rest is the big win with the leg pain though.

There isn’t really any quick wins I’m afraid.

It’s so frustrating but I’ve read loads on rectovaginal endo and surgery is supposed to give quite allot of relief once the healing is over so hang on in there.

X

[Sagada]

Hi, don't worry - I've started now my forth week of recovering, some days are better, some are not. Sometimes im able to make 5 steps only after a lomg good massage on my back and legs. My nurse said that pain in legs can be caused by nerve damage during the operation, but it doesn't necessarily has to be permanent, so nothing to worry about too much. Some people are fine after a week, for some it will take months to fully recovere and it's absolutely normal, just take your time about mirena coil- I'm one of the rare example where the coil caused more pain and problems than it was worth it. For the first 6 months (!) I had pain and constant (!) bleeding, than it got easier for another 2 years but the endo kicked in properly and I got ovarian cyst. Funny enough all the symptoms got better as soon as I got rid of the coil in early June. I'm not against mirena as I know a lot of women with endo who got better with it, but still there is this small percentage of us for whom mirena will not do any good. Just keep open-minded and see what's the best for you. Take care

[luthien]

Hey, it can take up to 4 months for you to completly heal from surgery. Internal healing takes quite a bit longer than external. When i asked my doc last time i had my lap, he said our body can't tell the difference between endo pain and removed endo pain, we associate it, so we think nothings changed. It should improve over time. My specalist isn't keen on any sort of hormoned during or after surgery as he says it's best for a few months while recovering to see how you feel, as any symptoms he knows are only from surgery not side effects of hormones. Then when fully healed, see what the remaining endo symptoms are and set treatment as then there's a baseline for improvement; it helps us be realistic with what symptoms can be improved. He did stress that although they do their best sometimes some pain is from the nerves and can't be sorted. that's why his method of one treatment at a time makes sense. Well it does to me.

I haven't had the merina coil so can't comment if that's causing problems; i've heard some women say they've had so many issues they had to have it removed. And that it itself according to books and current documents on side effects says it can take up to 9 months for the body to get used to it due to the high levels of hormones