New here and in tears of agony

[Daisy4567]

Hi all,

I have suffered for many many years with my periods. Long story short, the past few months have become unbearable with codeine and naproxen not touching the pain. Two weeks ago, I had a Laparoscopy and Hysteroscopy which confirmed severe Stage 4 endometriosis and the presence of two large endometriomas on my right ovary.

My bowel is fused to the back of my uterus and right ovary. My right fallopian tube is stretched up over the endometriomas.

I have been started on Decapeptyl and whilst my Consultant wasn't very forth coming with info re side effects, my nurse has been and I know now things are going to be worse for what will hopefully be the last and only period whilst on it.

Yesterday I started my period and the pain is unbrarable. I actually just screamed out when I went to the loo and had to turn to wipe my bum (sorry if tmi). It feels like a knife is stabbing me.

I was wondering if you girls have any tried and tested techniques you have to ease the pain? Now it has been diagnosed as endometriosis I have much to learn but I can't find much about pain relief online other than NSAIDS and paracetamol (which I am dosed up with but they are not touching it). I have also been using a hot water bottle.

Can you recommend anything else?

I am so pleased to have found this site as reading your posts, it is a relief (although not pleasant) to discover other people understand the severity of the pain.

Many thanks in advance xx

[Cat247]

Hi sorry for your pain i also have stage 4 severe endo with frozen pelvis. I just had my lap on monday so slowly getting my head round it. Have they not offered you more surgery? I had two options either hysterectomy or they can try a clean up op to see what they can remove. I am 30 and would like a 2nd child so went for the clean up op. I now have to carry on taking my pill no break and i should get a letter really soon about next op. I am hoping they will meet with me to discuss everything first as i feel all the info and options were thrown at me the second i came round from the op. Did they give you other options? I am surprised you have been left to still have such awful periods now they know whats causing it. I really feel for you. My life has been horendous for the last 4 years cos of this awful disese.xx

[Daisy4567]

Hiya Cat and thank you for the reply.

My Consultant, like you, threw my options at me after surgery but didn't (and actually refused!) to discuss it further or explain further as he said i was still under the influence of the drugs. I was with it enough to have written a list of questions for him which he was a bit annoyed about answering.

I haven't got children yet, although I would dearly love to be a mum. He said I would need more surgery (hinting at a hysterectomy really i think) and is pushing me down the road of Ivf. I have been referred to a Consultant who is more Specialist in endo.

It was a huge shock as i had gone in to get a cyst off my ovary but then they found all this. I have been told I have a frozen pelvis too but he said If they had tried to remove anything then I would have ended up with a colostomy bag and need a specialist bowel surgeon on the Surgical Team at the next op.

As mine is very advanced with two large "chocolate cysts", I worry about surgery as I have read you can have it 'cleaned up' and the cysts be back the next month .

Just have to see what January brings.

I see the Sister next week for the next injection of Decapeptyl bit won't be letting her do it until I am satisfied i won't have to endure what I just did. I couldn't breathe for the pain and it was constant.

Also, I am constantly spotting too which is getting me down. The decapeptyl is supposed to stop my periods but sending me into a faux menopause but I still got the first period on it which was terrrible.

How are you feeling? Have you had your letter yet? Xx