Hi I’m new to the pelvic pain support group, please bare with me as probably a long post. I will try to bullet point my history to make easier reading!
- Pelvic Pain, horrendous periods, other symptoms including bowel problems all from 2009 (although always had horrendous periods)
- messed around by various docs, told i had a bad back etc, even told Pain was psychological from 2009-2013, I begged to see gynaecology where I was finally helped and diagnosed with severe stage 4 Endometriosis and frozen pelvis (all organs within pelvis stuck together)
- May 2014 big op to remove all Endometriosis was successful and after recovery I had 6 months of being pain free and having my life back.
- Dec 2014 I fell pregnant and in pregnancy bits of pain started to return and since giving birth in Aug 2015 the Pelvic pain has returned and got worse over time.
- March 2017 sent to a different hospital to mine to have a laparoscopy to remove any adhesions or endo if it’d grown back. This hospital did nothing. Left me me with adhesions sticking both ovaries to the pelvic wall.
- Obviously still in pain so I paid privately to see a gynaecologist who I know is good back in my area. He couldn’t believe they didn’t even try to free up my ovaries in the op. As my pain is right sided he said he’d do an op (back on NHS) to remove adhesions and remove right ovary and tube as so stuck down.
- Nov 2017 have op to remove adhesions, right ovary and tube. All went well. Surgeon said after he’d hope my pain would improve but if it doesn’t it means that it probably wasn’t the stuck ovary causing all the pain. He can’t really do much more as just works in gynae and he was happy no Endometriosis found currently.
- fast forward to now and recovery side of things was hard but ok and I no longer have the stabbing pain in the ovary and tugging and pulling sensation I used to get. However the pain in the right side at the back of my pelvis is there still, never went and at times can be worse than ever. So it seems the pain and problems from the ovary were just small in comparison to this.
I’m totally deflated and the pain is so debilitating. I have a 8 and 2 year old and normally work 3 days a week although currently still signed off work since the op.
- Yesterday I went to pain management I had quite high hopes as I saw this guy in September and he talked about an MRI for my pelvis and possible injections. I’d had a MRI on my back before but my back is fine, no sciatica.
So I see this guy and he says my pelvic MRI got rejected because they didn’t deem it necessary as all looks fine down to the sacral region on my back MRI. He also now doesn’t see the point in injections. He said that I had one before and it didn’t work. I explained that was 8 years ago I had that when nobody knew I was pickled in Endometriosis so back then I was in pain with that! He also said an injection if works may only give 6 weeks to 3 months free of pain. I’d be happy to have a week free! But he basically said I was too young (I’m 34). He said if you were 87 I’d give it a go. What the f**k??!
He’s been basically not willing to do any more investigation (e.g scans) or look closer at nerves. I cried for ages telling him how it’s effecting my life. He thinks I need to learn how to manage my pain! (I’ve managed long enough now!) so I’m going on a 7 week pain management course where I have physio and see a psychologist!! Do they think it’s all in my head? I could scream. He’s also increased my meds.
Currently on Gabapentin 900mg got to slowly increase over next few weeks to 1800mg 😱
I’m on 10mg amitryptiline and take 30/500mg of co-codamol up to 4 times a day.
He’s also writing to my dr about another drug to try if increase of gabapentin doesn’t work.
Because I was going round in circles with him and didn’t really want to leave without asking a million questions he said he’ll discuss my case in a meeting in 2 weeks with other pain consultants and write to me if anything comes of it. I don’t feel overly hopeful.
He made a comment that I’d had 4 ops and none had worked. I nearly screamed. As mentioned above my big op in 2014 did work and as you can see from my explanation of my ops they’ve not just been done for no reason!!
So my pain is basically right sided in back of my pelvis, it can radiate into the bum, hip, front of pelvis, down the leg and in to the foot. I wake up with it but it can flare worse from too much sitting, walking, standing. Basically anything can make it worse and it’s daily!! I also have bladder problems since my big op in 2014. I can see but have to kind of lean forward and use tummy muscles to push my wee out. I don’t empty properly so do know how to self catheterise if I need too. I suffer with UTIs quite often and along with other symptoms do wonder if I have intistitual cystitis but not sure at the min.
I feel like they don’t know what’s wrong now so will leave me suffering. He mentioned I could have the tiniest bit of endo or scar tissue somewhere causing extreme pain which might not have been seen in my op as so small. When I questioned that later in the appointment and asked if we could find out out if that’s the case he back tracked and said he didn’t think it was!!
So sorry for long post. Any help or advice totally welcome.xxx