6 months after surgery and still in pain ): ...

[hannah11]

Hi everyone

I had excision surgery 6 months ago and I’m still having painful periods. It feels like nothing has changed.

My surgeon says the pain can’t be endo related because he removed it all. I’m really exhausted too (have basically been housebound since the op) so he said it might be fibro. The thing is though, I’m not in pain all the time, just when I’m on my period and when I ovulate. And it’s localized to my pelvis, not all over my body as is typical with fibro.

He went on to say there are lots of elements to pelvic pain. He suggested the endo might have done nerve damage, but I was under the impression that if endo affected the nerves I would be in constant pain, not just when menstruating (but I could be wrong) He also said maybe my body is remembering the pain (referenced phantom leg syndrome)

This is my second surgery with a BSGE surgeon. The first told me she removed everything and my pain was due to adeno. This second surgery was supposed to be explorative, but he found loads of superficial endo and excised it and said there was no sign of adeno.

I don’t really know what to do now. Should I give it more time? Should I see someone else? I just can’t believe the pain didn’t improve. I feel really heartbroken by this whole thing.

[kikishi]

Hi Hannah, sorry to read your post that you are still in pain. I am in the USA and I had a surgery with a top specialist in June 2016. The pain improved after about 10-11 months. So maybe you are still recovering. I was back to normal. The saddest news is, I am now back in pain and if you think about it, the length of time when I was not in pain was really brief. Like you I feel heartbroken by this whole thing I am only 27!

[hannah11 in reply to kikishi]

Wow I am so gutted to hear your recovery took forever and then you didn't even get much time pain free, that seems so unfair. I am really hoping you get the pain under control again soon!

So did your pain gradually lesson in those 10/11 months post surgery or was it at the same severity as before? I'm just trying to get my head around how normal it is for me to feel like nothing has gotten better.

Thanks for replying!

[kikishi in reply to hannah11]

Hi Hannah, thanks for your wishes. For me, I immediately feel better post surgery - my leg pain, back pain was gone right after. The tummy pain took a while to subside. But I noticed my energy level went up right away after surgery too. During those 10-11 months, I think I feel more pain when I exercise and the pain is centralized near my pelvis (not so widespread as it was in the past). SO yeah for me the pain was still there but it was definitely much better than before surgery. My period pain was gone too.

But like I said, a lot of it, including leg pain and back pain , are creeping back !!!

[Starry]

Lots of gentle hugs. I really relate. 9 months on my surgery has had mixed results too, left me with new pain and lasting after effects including cfs, esophagitis and widespread intermittent neuropathic pain,while removing certain tumor specific symptoms. Though I know it was necessary to preserve my bowel, it's been a hard adjustment to make from expecting that it was a solution to the problemxx

Your surgeon is right that the body can develop an overactive pain alarm system when exposed to chronic pain for a long time. The site retrain pain.org explains this really well and I found it really easy and helpful.

It may be worth a consult with a good pain specialist or ask to be referred to your area's chronic pain clinic.

Given the timing there may still be an inflammatory factor which can also be aggravated by the physical after effects of stress (Google cytokines) and the sheer trauma of major surgery. I've definitely been going through a grieving process for my lost former life that I had thought I would largely get back.

Perhaps it may be worth exploring anti inflammatory diet to try to help things calm down eg turmeric, ginger are both anti inflammatory?

For me taking pregabalin finally interrupted what I think was a physical stress or trauma driven vicious cycle and helped moderate my symptoms. Opioids tend to be unhelpful and can actually intensify pain.

I also found the book 'coping with chronic pain' by Neville Shone a thought provoking read and it has some good cbt pain management tips to try.

Thinking of you xx

[hannah11 in reply to Starry]

Thank you for all the resources you posted, I appreciate you taking the time to do that. And I'm really sorry to hear you're in a similar boat! I also have CFS on top of my endo and it's intense. How did pregabalin interact with your CFS symptoms? And also, what does your neuropathic pain feel like? (feel free to ignore these qs if too personal!)

I'm def trying to tackle my pain with a multi-pronged approach (anti inflammatory diet, seeing pain specialist etc) and have had some mild success, but I guess for me it seems really obvious that my pain is connected to my cycle and I feel like it's not really being taken seriously. My doctor told me he removed it all and there is nothing else he can do so he discharged me. This exact thing happened to me two years ago (but that time I was misdiagnosed with adeno, told to go have my babies and then come back for a hysterectomy...I was 21 at the time), but then it turned out the endo hadn't been excised properly. I'm just tired of having to fight to be listened to and find all the answers for myself. I'm sure you can all relate.

[MrsNGoo]

Starry the comment u made on opioids is all too true I think. The pain meds we take for a prolonged time can cause the pain to be worse especially if u don’t take it and then take it again. It doesn’t work as well.