Been diagnosed last week in emergency op. No info, follow up ANYTHING!! HELP!!

[moontide]

Have been suffering for too long to remember, two cervical cancer scares, nerve pain in back, etc, they thought i had a hydrosaplinx when i had an ultrasound last Dec after a referral to gynae. Booked on the long waiting list for a routine lap op. Last week (on the Monday) I was in such severe pain that the morphine tabs given to me by the dr were not touching it, went to A and E, admitted. They did a newer u/s, queries of growth, queries not a cyst, hydrosaplinx etc, had ct scan next mornng, nil by mouth from the midnight as concerns i had a tumour/cancer!! Had ct scan, by 2.30pm i was in surgery. Scary time!! Woke up, found out briefly that they had initially found a loop of my bowel adhered and fused to my left ovary etc, said it was really thick and dense, ''properly stuck together''. After they removed adhesions they also found endometriosis spots on my peritoneum wall, left ovary and right ovary. They also found what they termed a 'pseudo peritoneal cyst, measuring over 6cm each and every way. Gosh, no wonder I was in pain. Discharged net day, was not told anything more. Looking at my copy of the discharge summary, they have offered me no follow up apt (which I aready knew about), have not asked my GP even to go through it with me, offer me advice on treatments etc. I dont know what grade it is. I know they found 'spots' of endo on p.wall area and left/right ovary (did not remove though i believe), and my understanding is the dense thick amount of adhesions contribute as part of endo? Also my ovary quote "was like a trapped spider in a massive web of the fibrous/adhesions, the pseudo peritoneal cyst being the issue that meant the ovary was trapped inside the adhesions, plus they foun a 5.5cm ovarian cyst bulky on left ovary, but left that alone too. I am guessing due to adhesions that the grading will be a 2 or 3, no idea though, wasnt told. Also, what do ido now? Im 33, 34 next week, no children yet, have early miscarried 3 times that i know of, still want to have a baby if i can. I don't even know if thats realistic or not. Should I be angry my gynae has dismissed me, not offered help, advice, follow up apt etc? Do I have the right to ask my GP for help n advice? What treatment can i ask for? What helps, what doesn't? I am embarrassed as it feels like the hospital were saying, just get on with it! I am lost, bewildered, angry, scared and have no idea what to do next. Anyone else had a similar experience, or can offer me some guidance on what i am entitled to, who i can go to etc? Sorry about the length. My first post/question, and my head is doing cartwheels! Thanks

[PinkDaisy]

Hi Moontide, thanks for sharing with us, what a scary experience!

I was told I had Endo last summer after an emergency admission whilst on holiday but whilst they didn't tell me much about it all - told to go away & Google it! - I did have an appointment already booked with a gynaecologist for the next week or so, following scans which had showed up numerous cysts, so I had someone I could talk to about it all.

its easy to say i know, but DONT feel embarrassed. this disease is affecting you and you need help to sort it, you cant just go to Boots and get some medicine to make you all better, so call whoever you need xx. I would suggest going to see your GP first with your discharge notes, to explain what's happened and to ask if he'll refer you to a gynaecologist (maybe the one who did op?) but preferably one who specialises in endo. There is a link somewhere on here where you can look up local gynaecologists yourself if you wanted to do a bit of research first. Sorry I can't find the link at the moment.

I hope you get some answers soon and in the meantime rest up & I hope you have a speedy recovery from you op xx

[worth71]

Hi there - I was diagnosed this week too but not by emergency. My op was a planned diagnostic/treatment lap, removal of mirena, endometrial ablation and on the actual day it was decided I would be sterilised.

Even as I drifted off to sleep I still thought they wouldn't find anything as so many of the doctors at the hosp have dismissed my symptoms but upon waking up the surgeons words were 'you will need a total hysterectomy inc ovaries, too much endometriosis for me to even attempt to treat or maybe try injection for false menopause, see you in two weeks to discuss' I was still very groggy so couldn't really take it all in, but I am feeling like you, my head is in a complete spin, you go all these years thinking it can't be anything serious by how doctors tell you it isn't and then to go to the last resort, and knowing that even hysterectomy doesn't always sort it out too, I'm all over the place. Everyone is pleased for me that I've been offered the hysterectomy but they don't understand that it won't necessarily sort out the endo, as it says I have it all round my ovaries, POD, and adhesions to bowel and surely if its not removed at time of hysterectomy then it's pointless.

I'm trying to get an app with my gp before the hosp app, I'm trying to research as much as I can whilst I'm resting up, but I know I won't make this decision hastily, I want to know all options and not feel like I'm being fobbed off again.

Take care of yourself and get well soon xxx

[Amb43]

Bless you! That's one hell of an experience! So much happened to you and no explanation or details of a follow up/what to do next is an ABSOLUTE DISGRACE.

You definitely need to see you GP a.s.a.p. and tell him everything you have told us here, along with your discharge notes. You definitely need a referral.

You could try ringing the hospital, pester them and keep asking what happens for you next. Ask them is it normal practice to be admitted through A&E, investigated, and then sent home with no follow up, nothing.

If you have the energy and inclination, I would even write to someone at the hospital, I did, after a ridiculous first Gynae appointment, in December, and went from being told to "Your pain is not Gynae related", "You can't have Gynae pain if you are not menstruating" and "take these and come back in April", to within weeks having had a diagnostic lap finding, guess what? Endo! Also had a phone call yesterday from My gynae's secretary to confirm my post op appointment, and that I will not being seeing a registrar and that the Head Gynae who I wrote to is going to see me himself!!

Please take very good care of yourself, and never, ever, be fobbed off!!

Sending love and strength to see this through xxx