Accepting the ways things are....

[Kittykat8989]

Hey guys,

I’m feeling quite reflective today and wanted to share on here. I had major Laparoscopic surgery 4 1/2 months ago after a diagnosis of severe endometriosis. I never knew I had it and my symptoms only surfaced this year.

Although I am a lot better and a lot of my symptoms are gone I’m still not back to how I used to be and I am finding that hard to accept. I had a lot of endo in ligaments and most of the pain now I can only describe as sharp nerve pain.

I’m very active and have been doing lots of exercise since my op. I also try hard with my diet, no gluten, dairy, caffeine etc. However I don’t stick religiously to the diet as I just can’t lol.

How have others adjusted to their lives as they are now? I feel like an old lady some days (I’m 28!) as I need to have a rest if pain is too much. I try not to get emotional but it’s hard....

Would love to hear from others. The support I have received from this site already has been overwhelming 💜

[princessk09]

I’ve kinda just accepted it but don’t let it define me or anything. I had surgery 4 months but I’m still in pain some days so I’m just like oh well I just have to get on with it. But that just might be my personality and the way I’ve been brought up to think tbh. As I don’t really have anyone in my life to talk to about it all as they aren’t understanding

Some days I feel crap and have a breakdown in my room at night but it’s when my hormones are causes chaos and around my period etc.

I’m only 19 so on days I feel so drained, I feel old haha xxxx

[Kittykat8989 in reply to princessk09]

I wish I could be more like that.... I was being really good and super positive. I haven’t got the same positivity I used to have, I can just tell.

It’s great you have such a get on with it attitude... I suppose with my age aswell I’m

thinking about kids and if it will ever been a possibility 😢... sorry I’m on such a downer today xx

[princessk09 in reply to Kittykat8989]

Yeah I worry now about kids for the future as I have PCOS as well.

Don’t be sorry, we are all here for you and feel free to message me whenever you want xxx

[Kittykat8989 in reply to princessk09]

Thanks lovely 💜

[Lavendergirl1]

Hi, I'm due to have this op after being diagnosed stage 4 last month. From the research. they say as it's deep and affecting the ligaments and nerves, it can take up to 9 months before those nerve pains go. I hope this helps and hope the recovery continues well. xx

[Kittykat8989 in reply to Lavendergirl1]

Thank you! That’s very reassuring to know. I’m trying so hard to be positive and I was at the beginning, but now more and more time is passing I can feel it fading. How are you feeling about the surgery? X

[Lavendergirl1 in reply to Kittykat8989]

Hi, I'm not so bad thanks, they say 6 months wait until the op, so looking at possible private options, with a specialist, just to have everything covered. Yes that will be hard keeping the motivation going after the op, most people wont realise that these pains will take so long to heal and just presume we are fine again as it's all been sorted!! Keep strong though, hopefully the long term benefit will be well worth it. xx

[Bella29]

This is something I struggle with alot.vi was only diagnosed August 2017 and it took a while to find right consultant. I've always approached things using natural health and I'm now facing extensive surgery for stage 4 deep infiltrating endo. I know meditating and gentle exercise can help but i too struggle with consistency. I haven't found a way to accept my situation and trust the medics yet!

[Kittykat8989 in reply to Bella29]

The whole condition is such a mind field it really is. I know I gave myself the best possible chance of feeling better by having my surgery and I have no regrets. I went into it knowing I may never been 100% but of course I was hopeful I would be!!

I’m lucky I have painless and light periods but the daily nerve pain is driving me bonkers!!!

Where Is your endometriosis located if you don’t mind me asking? X

[layahemma13]

Hi im only 3 weeks since having surgery for endo and im finding the pain really hard i had all the work done on left side but a week after surgery i was feeling fine and started doing house work etc and then out of nowhere the pain started on the right side and has not gone away 2 weeks later i can hardly move now, i csn only take fairy steps when walking as it hurts so much, i dont know whats happened but feel so down as i have 4 kids and cant do anything hardly at all

[Kittykat8989 in reply to layahemma13]

It’s so disheartening... what kind of surgery did you have? I always said to myself if the pain never fully went I would just find a way of living with it, but I’m not doing very well.

The whole diet thing aswell exhausts me aswell... I have to think about everything I eat and drink incase it upsets my fricking endometriosis!!!!!!!!! Xx

[layahemma13 in reply to Kittykat8989]

Hi i had diagnostic lap which they found lots of endo on my left ovary znd tube and all around the womb, and my colon was attatched to the pelvic wall and ovary so had that released and some biopsies taken, its just hard because i was doing fine a week after and then bam out of nowhere the psin on the right side started and knocked me off my feet i cant do anything, its wiered as i didnt have anywork done on the right side just a look around so dont understand the pain on this side, but i see doc tomoro for biopsy result and see what he says about this pain..

[Starry]

*Hugs* xxx

It is very hard to stay positive and put on a brave front day after day. Its utterly normal to have phases where hope fades a little and it feels hard to keep going. I'm in one of those myself. The main thing is not to give up. Sometimes finding small ways to nurture yourself until you regain energy to face the world again helpz. Sometimes just flopping in to a heap is all you can do. Its all ok, whatever you do to cope is what you need.

I've relaxed my diet a little, you need a few pleasure now and then. Giving myself conscious permission and not feeling guilty or beating myself up for it is a good thing. Though I have stuck to gluten free consistently.

I've not found any pills to be much use aside from pregabalin for nerve/neuropathic pain.

I'm just starting a course of cranial osteopathy which has good anecdotal reports. She thinks she can help my coxodynia and residual pain from the botched lumbar puncture.

I've also recently had acti-patches (nhs can prescribe them apparently depending on your ccg) and cbd oil recommended to me to try for the fiery pain in my joints, so I'm not out of options yet.

[Kittykat8989]

Starry you have been in my thoughts a lot. When I’m feeling down i try and remind myself of the things you’ve said and about it taking time but you know what it’s like. Not always easy to keep that momentum going. How are you doing!?

I really really don’t want to visit anymore doctors or medical professionals, I know that’s me being really stubborn and childish but I’ve had enough this year or appointments and consultations. Maybe I just need to give it more time. I’m not sure if this exercise is making it worse? Can intense exercise cause inflammation do you know? Xxx

[marti323]

Hi. Im so sorry that you are feeling such intense pain. In regards to your question about whether intense exercise could cause inflammation, I think it could. Pain from exercising is a common symptom for women that have endo. I for one would have a lot of pain when I try to sprint. Since you just had your surgery I think you should rest longer before doing intense excercises. I hear you should rest at least 6 weeks. Don’t rush it. Your body needs to heal.

[Kittykat8989]

Walking around town today doing shopping getting awful pain going from where they removed the nodule down into my legs. Feeling so low x