Don’t know where to go now

[Lucy_x]

Hi ladies ,

It’s been a while so I hope you’re all ok.

To those of you who have followed my story know the ins and outs but just to recap : I had a laparoscopy which came back clear, although further investigation has been carried out due to the lack of care and the disregard of the condition on the day of the op.

My symptoms mainly are : painful periods , pain during the month , feeling sick , mood swings , heavy periods and painful sex .

Recently I keep needing a wee all the time too , and most of the time there is no bacteria therefore cannot be a UTI, some of you did helpfully tell me that this can be another symptom.

The hospital I was with have now discharged me & I am so so lost with what to do. I am in constant pain of some form , I can’t have sex , and my periods are just debilitating as they are so heavy .

It’s crazy that I sometimes wonder if it’s in my head like it’s been suggested - until I type this out and realise it just can’t be .

I find it funny when I stated this journey I used to sugar coat everything to the GP and consultants not wanting to use the word vagina , or describe blood - whereas now I say it so bluntly as it’s the only way to get it across. Oh the joys of womanhood.

I’m just looking for some advice really. I have an appointment at the GP in 2 weeks time & I need to try and get the referral process started again, as I’m not giving up without a fight. Could anybody offer advice on what to be looking for when looking at different hospitals or consultants etc as I’m just so lost at the moment.

Thankyou for all your kind words and support as always. It always feels less lonely on here.

Lucy xx

[Holleymuzz]

Well short version of my long story was I had 2 ops removing cyst (1 large cystic tumour, the other a persistent cyst) they said they couldn’t see why my pain would be because of the cysts so they would look around. Each time nothing was seen and I was discharged. I was referred again back to the same dept. They said ok we have one final look then you need to start looking at other reasons I.e my bowel ( already been diagnosed with spasmodic bowel) this time they found endometriosis but said it was barely stage one , they burnt it away and not the reason for my pain and discharged me. It took me two years to build up courage to start the process again but decided to be referred to a proper endo clinic. After scans and mri ( adenomyosis being diagnosed by mri) they said they again would have one more look but it’s likely the adenomyosis causing such pain. 4 hours later I woke up to be told it was indeed endo and it was stage 4, and had to have extensive surgery to remove it via cutting it out. It’s been 14 months since then and in two weeks time I’m having a total hysterectomy and possibly a bowel resection because the pain is so severe I’m on morphine daily and my bowels are not working unless I use suppositories. So I advise you to look for a credited endometriosis clinic and dr to do the lap. If it’s not there then you know it’s not endometriosis, and then you can start looking into other reasons. Xx

[StefaniaJW]

1) If you get a constant need to pee and don't have a UTI, 90% of the time it's interstitial cystitis or endometriosis on the bladder. I suggest you look into the first with a urologist.

2) Sounds like endometriosis was there big time and no one saw it and removed it. Your best option is to contact a great endo excision surgeon (BSGE certified or better, a Nancy Nook surgeon) and discuss getting PROPER surgery.

3) Look into other options in the meantime: an anti-inflammatory endo diet can help immensely. Sleeping at least 9 hours per night, light walking, light yoga or swimming everyday or at least a few times a week. Taking supplements. You need to start looking into all of these to turn your life around and prepare your body for excision surgery (which I suspect you might need in the future).

[ourmolly]

You need to keep fighting until you see a Gyaenacologist. Having a good GP also helps. I had to keep fighting my case because I was so bad they could not let me have another period, as I needed a hysterectomy urgently. My GP had to phone my Consultant at his home to tell him that I had to have a hysterectomy before my next period. Keep fighting your case, and stressing what you are going through. Eventually they should listen and do something about it to help your situation.