Help 10 weeks post surgery

[Jessicasnelling]

Hi all,

Looking for some help and advise from you lovely ladies please am feeling desperate...

I had total pelvic peritoneal excision surgery 10 weeks ago. Surgery was a few hours long and they removed all endo from various places - urethra, bowel, uterosacral ligaments, ovary, pouch of Douglas the list goes on as well as shaving my bowel and separating my bowel from pelvic wall which had fused together. Removing all pelvic lining. They also done a cystoscopy at the time.

I was advised the average recovery would be six weeks, but now 10 weeks on I am still off work and suffering with my doctor and surgeon just saying it takes time. Please has anyone else took this long to recover and experienced the below symptoms still? My surgeon doesn’t seem bothered and hasn’t offered any helpful advise.

- constant dull pain in tummy

- sharp pain in legs and ankles

- constant exhaustion/body aches / breathless a lot

- feeling of constant water infections

- pain when passing stools

- Excessive night sweats

- horrendous period post surgery

I am still being prescribed tramadol and have tried reducing but then feel so awful increased again. Am really fed up now and work are not so understanding either.

I haven’t drunk alcohol and had a good diet, moved around daily etc since op so followed all advice.

Please help!

Much love

Jess xx

[Starry]

Hi xxx I related a lot to this.

My surgery was stage 4 deep infiltrating RV endo and adhesions. I had a deep bowel shave, ( narrowly escaped a bowel resection) excision of 3.2cm nodule, excision from bladder, us ligaments, and above both ovaries, adhesions removed to release my trapped bowel. I also had to have a partial vulvectomy and lost part of my vagina ( about 4 cm2) due to the endo infiltration damage.

It was on July 19. I only started back 2 November on a very gradual phased rtw. So 3 1/2 months 14 odd weeks and I am still not right. I developed complications, I developed viral meningitis 4 days after the op and spent a week in hospital having lumbar punctures and antibiotics and treatment for a blocked bowel. Then I got nerve pain badly in my coccyx and running down my legs into my feet and toes.Pain on bowel movements has largely eased for me now most of the time, it was related to the meds often. I've started to take probiotic to try to restore my gut balance which is what has gone screwy I think.

Then 6 weeks ago I developed GERD / reflux esophogitis which has been horrendous, it's more painful than the endo was and hurts to breathe. Throughout the extreme fatigue has never really left me and I am sleeping as soon as I get back from work all afternoon. I also am suffering some form of post trauma stress and anxiety I think as I had 2 Panic attacks this week trying to cope with having been restructured at work while I was off.

Not sure if any of that it helps any but you are not alone. People told me to allow a months recovery for each hour your under GA, for me that's 5. But friends told me it took them six to twelve months to really get over it.

If you haven't I'd get checked out to eliminate infections especially if it's water works.

[Jessicasnelling in reply to Starry]

Hey!

Thank you so much for replying and sharing your story, I feel so relieved to hear that I am not alone. I’m so sorry to hear you have been through so much and had so many extra complications. How do you feel now? Do you still experience pain and nerve pain in legs?

I hadn’t heard the recovery every hour theory makes sense mine was 5 hours also! And our op sounds very similar! I nearly had to have bowel resection also and have stage 4 and same adhesion areas etc. It’s good to hear we aren’t alone. Just really hard when they tell you a number of weeks and then it doubles without any warning or reason from the professionals.

I have had follow ups with surgeon and dr. So hopefully no infection.

Xxxx

[Starry in reply to Jessicasnelling]

Yes, pretty similar stories in many ways. Xxxxx

It was a biologist friend who said that, the GA drugs themselves are quite toxic and pretty hard on the body apparantly, let alone the extensive surgical intervention.

I was first only signed off six weeks too, and yes it got stressful as work wanted a definite return date and I was nowhere near so a GP signed me off for a further six week block, rather that lots of little extensions, which really helped take the pressure off. Since that happened work have been excellent as they clicked how serious it had been. I could have extended leave again but reckon now the longer I leave it now the harder it will be mentally and I hoped it might help having a bit of normality.

I bought a u shaped cushion which did make a big difference so the nerve pain has gradually improved, is worth a go if your leg pain might be that . I'm now having to sleep on a foam wedge for the reflux which unfortunately aggravates it, but it's overall much better.

My periods were all very grim, hoping number 4 will be kinder. First 3 are often bad due to inflammation. I did have night sweats for a while too but that did settle probably around 6 weeks.

It's the GERD reflux pain thats killing me. I stopped taking painkillers totally when it happened as they are a known cause of it.

I don't know if it helps but I had interstitial cystitis and found going to organic toiletries and sanitary ware was very helpful to avoid paraben and sles.

Go steady, it seems these recovery journeys are a bit of a marathon. Pm me anytime, I've not met many with as similar surgery as mine.

Xxxxx

[Jessicasnelling]

Thanks again yes do already use all natural products to try and help they done a cystoscopy to check if I had interstitial cystitis too but apparently is ok so perhaps feeling of infection is from the test.

That’s helpful to know your friends had that amount of time too, it’s reassuring we are normal in our healing!

How is your reflux now? I hope it’s better for you.

Do you mind me asking what surgeon you used?

Back at you pm me any time it’s great to chat. I also am suffering with depression and anxiety so feel we relate on many levels

Xx Jess