Feeling completely and utterly hopeless- didn’t think I’d be posting this!

[Kittykat8989]

So....... as many of you lovely ladies know I’m seven months post major excision surgery. I have been doing amazing! No pain (hardly) and just loving life.

Well things came crashing down about 2 weeks ago.. I started to feel only what I can describe as a soreness internally and it’s not gone away. The pain is NOT the same as before, however I’m experiencing real soreness where my recto vaginal nodule was removed and don’t know why???

Maybe I’m being naive but I just can’t believe it COULD be back. I understand it’s a possibility but wonder what else it could be??

We are TTC next month so I’m not bothering with doctors or anything like that. I just felt I needed to get this off my chest as I’ve exhausted my friends and family with all this crap last year.

xx

[dev1984]

Hi. I had my 2nd surgery, this time excision too in Manchester St Mary's, exactly 7 months ago too 😮. Before this op the Dr warned it may not help as alot of my adhesions are on ligaments and perenial wall (think this is the word). I had relief maybe 2 months, occasional pain every so often but totally tolerable. This month...ovulating the worst pain, my complete pelvic area, down my legs. I only take cocodamol in these situations. What were your meds of choice?

Its so nice to have people going through similar pain to talk to. I am still under gynea as also ttc! But heartbroken as pain is so bad around the crucial time?

[Kittykat8989 in reply to dev1984]

Thank you so much for responding 😊

I suppose I just can’t get my head around the fact I had major bowel surgery (this is where most of my endo was) only 7 months ago and it could be back again? I also had a lot in uterosacral ligaments, pouch of Douglas.

I’m trying to think of ways to move forward as I’ve not been myself the past few days, ie. sitting watching Netflix all day 😂.

I didn’t have much luck finding a good painkiller last time so will see how I go. I’m trying to push through any pain but obviously it’s hard at times.

Adhesion pain did come to mind but I really know very little on the type of pain they can cause?? Can it feel similar to endometriosis pain?

Xx

[Kittykat8989 in reply to Kittykat8989]

Also... I don’t want to keep having surgery. I’d maybe consider having one every 5 years or so but I’m not making this an annual event. The last one took such a toll on my mentally and the Zoladex i was on made me forget who I was. It was so scary!! Xx

[dev1984 in reply to Kittykat8989]

I live on the Isle of Man. My last surgery was meant to be the one that was going to make everything better. Although the Dr said it was possible i would get no relief in terms of pain...i thought maybe i would. He operated for 2 and a half hours i think this is lengthy in terms of a lap op. We same to have similar pain. Apart from the bowel...poor you. I have only ever been told to take codine??

I am at the end of my patience with it all to the point I would almost ask for a hysterectomy.

Its a lonely condition always trying convince people of the pain you are in?

😣😊

[Kittykat8989 in reply to dev1984]

I don’t mean to add to the gloom but I think with this condition a hysterectomy isn’t always the answer unfortunately. I’ve read many MANY stories of women who have had one and either felt no difference or their pain has got worse.

We can talk to each other now 😊.

I appreciate it’s hard for people to understand what it’s like as it’s only real “marketed” as a condition which causes bad periods but there’s so many more levels to it which I’m still

Learning about.

I think things will help you massively if you can get in a pain med that’s really effective for you. I know it’s hard but think of what you want.

We will both have little bubbas, we’ve just got to push through the s*** and we’ll get there 😉 xx

[dev1984 in reply to Kittykat8989]

😊

[wanwood]

Ugh, that sucks. Hopefully it’s not what you think it is — bodies are weird after all.

When you’re TTC they say not to use a NSAID for ovulation pain, I believe as it can stop the egg from breaking through. Just thought I’d mention it as something to look into before next month! I’m TTC again after extensive excision surgery and a bit bummed that my ovaries still seem to be generating pain. xx

[dev1984 in reply to wanwood]

Really. Thanks for that tip....my gynea has said thats the go to when i have pain! 😕

[wanwood in reply to dev1984]

Well you might want to take this advice with a pinch of salt then! It's one of those things that there's some evidence for but it's not overwhelming. If you're in agony, do what you have to do.

In the most recent study I read about, taking NSAIDS every day 10 days in a row inhibited ovulation, so if you ease up there may not be an issue. Diclofenac was particularly a problem.

[luthien]

Ahh no, sorry to hear the pain is back

I've read up that sometimes adhesions can happen again and organs can stick themselves together. That happened with me, between my first and second lap my left ovary had stuck itself down onto my uterus again and that was only 6 months later. I didn't have any symptoms for that in particular as I still had endo symptoms so didn't notice.

Hopefully all goes okay with you, just relax, I've learnt not to plan anything in life; whetever happens just happens

[Kittykat8989]

Hey,

Thanks for replying ❤️

I’ve actually felt better the last few weeks, not sure if I was overdoing it with the exercise!?

I went into panick mode thinking “it’s back it’s back”, any little twinge or pain I do think the worse so you’re right I probably need to relax.

Going to start trying for a bubba this month as well 😦, so I’m stressing about that as I’m so desperate to have a baby!

How are you doing?

xxx

[luthien in reply to Kittykat8989]

Yay, glad you're feeling a little better

I'm good, we're not trying or preventing, just seeing what happens naturally I think the idea of trying puts pressure on the relationship with times, measuring, testing, just let things be, but then again the sex part isn't a problem for us lol!

Just remember stress can cause all kinds of problems; it can make endo worse, it can mess up our cycles which definitely doesn't help, not to mention other functions. Also if you're stressed think about your partner and their feelings, after a it's about them too; so lots of communication. I sometimes can't help but feel that when women are trying they forget the guy has an important role, they need to be healthy, and not stressed, plus free from fertility issues, they sometimes get overlooked

All the stuff before the baby should be a natural part of a relationship; as much as possible a lot of the time xx

[applebird]

Hi there,

It is possible at this point that endo may have come back. Also with successive surgeries you can get the same sort of pain due to scar tissue thickening and binding organs together much as endo does. If not total hysterectomy and ovaries are left then endo can return.

If you are trying to conceive you should not be taking anything other than paracetamol and even then only sparingly.

I will send you some info when I get a chance about what I did to try and help get pregnant quickly and manage the pain. x

[applebird]

healthunlocked.com/endometr...

Scroll down for my response to another lady re. ttc.

I was on 400mg tramadol a day with co-codamol 30/500 as well, scaling back the pain meds is really tough. If you aren't on much now I wouldn't dabble too much as pain killers can inhibit pregnancy as somebody else said and also can cause developmental problems with the baby, especially early on in pregnancy (same for alcohol effects - worse early on). Chat to you gp about it and how to manage it, I found fertility acupuncture helped me a lot x