Hello, I am new to the forum but old to the world of Endo.
(GO TO THE END FOR A MORE CONCISE VERSION)
Here's a brief history of my case. I started with 'obvious' signs of Endo 13 years ago. After a battling 5 years I was finally given a laparoscopy and was diagnosed with Endometriosis. By that time I was in absolute agony (despite living on strong pain killers) and had developed moderate Chronic Fatigue Syndrome (though that wasn't diagnosed until 2 years later). The initial lap showed that my Endo was low down in my pelvis, predominantly on my right side including my right ovary. It wasn't 'extensive' but because of its location it caused a lot (!!) of pain. What followed was 7 months of Prostap (pseudo menopause injections) with HRT and tricycling the contraceptive pill. Unfortunately these did little to help me, and I ended up having another lap and excision surgery, and the blue dye thing through my tubes (sorry, I forget the term). I feel that the surgery was not a success (my Surgeon disagreed) and I awoke in the recovery room in agony. My gynae felt that the only options for me were Prostap again, Oophorectomy (ovary removal) or pregnancy (whilst my fertility organs appeared to be ok). The only viable option was to try and have children. Thankfully, I went on to have two healthy children in quick succession. My youngest is now nearly 3 years old and my Endo is starting to affect my life once again. It's not quite as bad as it used to be, however my life is different these days (I no longer 'work' on my feet in a stressful job etc.) but I do have to take Co-codamol everyday to manage the pain. I used to break down crying all the time and was very depressed because of it all, as well as exhausted and all that Chronic Fatigue Syndrome brings. I do not want to get to that point again. I feel like crying just thinking about it.
So, my current situation... For the past year I have been going to my GP with pain in the left side of my abdomen and a lump. An ultrasound showed nothing. When the pain intensified I returned and was passed onto a Bowel Specialist. He examined me and said that the lump was normal (poo passing through the sigmoid colon). Nonetheless he performed a colonoscopy to check for any disease within the colon due to the pains. I went for the results on Tuesday and the biopsies were fine. Beforehand I had already decided in my own mind that due to my 'old' Endo pains returning low in my groin (sharp pain, pulsating pain, shooting pains etc.) that the pains in my left side (approximately belly button height) may also be Endo (due to similarities to the old pains). Anyhow, the Bowel Surgeon questioned about the incidence of pain etc. and he also thinks it is Endo. As such, he has offered to perform a laparoscopy and burn off any Endo deposits that he finds.
Prior to my appointment I was expecting either something untoward to be found in my bowel or to be discharged. The Surgeon has completely knocked me back by suggesting that he himself do a lap and burn any Endo off. I told him that I need to seriously think about it. These are my main reservations...
1. I'm not sure I want to go through the whole process again. I don't feel that my last laparoscopy (6 years ago) achieved much and, due to CFS, I was fatigued for 3+ months afterwards. I had the colonoscopy a month ago and that has made me very low energy. I'm not sure how well I'd cope after another bout of invasive surgery. Plus, what if it's in my head? (I don't think it will be, but I feel like I'm back to pre-diagnosis in some ways).
2. Should a bowel surgeon be removing Endo without the presence of Gynae? I have done lots of research on him, turns out he is a renowned surgeon, and he said there would be a Gynaecologist in a nearby room to check things over with (though not be present throughout).
3. Because my pain isn't as bad as it used to be, should I just hold back for now... perhaps it won't get that bad this time? (Though maybe I'm just hoping it won't). What if they operate and don't find much - I feel like I may be wasting their time.
4. Should I discharge and go back to Gynae? My husband thinks that if I’m going to be operated on then I should go the whole hog and have my ovaries removed. Ovary removal is not high on my to do list. Maybe I should consider it though?
5. Should I just 'shut up and put up'? My pain is bearable a lot of the time. I do have to take Co-codamol everyday and often have a hot water bottle... maybe I should just plod on until the actual menopause? I'm 35, my Mum went through it in her mid-late thirties, maybe I won't have long to wait?
6. Should I try to have another baby? (apologies for making it sound so trivial, I know many Endo ladies suffer with infertility and I really don't mean to cause any offence). The Bowel Specialist did suggest it at my first appointment with him. Pregnancy never 'cured' my Endo, but it certainly helped to lessen the symptoms. Some huge doubts to this are that firstly, I may not be as fertile now (if the Endo has indeed spread); a child is not an easy decision - they're very hard work (though a blessing too); my husband and I are not in the best place at the moment - more friends; we are unsettled in accommodation (renting) and work (my hubby may be losing his job soon).
Apologies again for my rambling thoughts. I guess, to be concise, what I want thoughts on is:-
Do I let the Bowel Specialist perform the lap and burn out Endo (knowing that he won't be touching the Endo low in my groin, just on my Bowel; knowing that I will have a hard recovery with the CFS).
Do I discharge and get transferred back to Gynae and have something more 'final' done (e.g. oophorectomy)?
Do I 'shut up and put up' with it all? Perhaps I'll be menopausal soon anyway.
Do I try for another baby, which should help to subside symptoms?
Any thoughts or comments will be much appreciated. I don’t feel like I have anybody in my real life to talk this through with (I’m not close to my family and I lost a lot of friends when I was depressed). Thank you for reading,