WAITING

[Starley]

Right, so I'm STILL waiting for my lap, it's getting so frustrating because in pain for 80% of the month and it's draining. Due to Covid and "obvious" endometriosis signs and symptoms the gynaecologist is willing to do an over the phone consultation with me. However, I had a phone call last Tuesday about my telephone appointment being booked for the Friday morning, I was happy because I thought I was getting somewhere but then by Wednesday afternoon I had another phone call cancelling my consultation as the doctor would be "taking Friday off", they then explained that they would call me as soon as they made arrangements for more appointments. I can't explain to anyone how deflated I feel, I felt like I got kicked in the teeth when they told me that., purely because it got my hopes up. I've been waiting almost a year for the lap and I understand that there's people out there waiting longer but I can't explain how much agony I'm in and how much this is taking over my life. I can't remember a time where I felt "normal" and had energy, I can't remember the last time I went a day without saying to my partner that "I'm not feeling good", it's getting me down. I don't think anyone will ever understand this problem until they go through it, it's not just period pains or ovulation pains. It's all the things that come with it that make it such a huge problem, it's completely taken over my life, although I remain positive that I will get the answers I'm looking for, it's hard not to feel like people don't take me seriously. I mean, how can I expect people to understand how bad I feel when it's not visible? AHHH!

[Dinky26]

What are your daily symptoms? I'm in constant agony too and its draining the life out of me x

[Starley in reply to Dinky26]

I constantly feel fatigued, from the minute I wake up until the moment I go back to bed, I feel achey and exhausted, sometimes I can't get out of bed no matter how much sleep I've had. I have no energy and it almost feels like I have the flu, I get brain fog and can't focus, sometimes I feel dizzy and I'm constantly grouchy and snappy towards others. The pain in my lower right abdomen used to only appear when I was ovulating or on my period, now it's every day, some days are a lot worse than others, some days the pain is so bad I can't walk or move, other days it's ok and I've learnt to mentally block it out but when it's severe or affecting my back and right leg it's horrendous. I know the pain's about to get bad because it sometimes causes me to have diarrhea or bad bloating. It's not gas, it's a completely different pain to gas, it's like a dull ache with lightning bolts of pain all in that area.

[Dinky26 in reply to Starley]

Have you been checked for cysts? I know these can sometimes cause back and leg pain. I have terrible back and leg pain in both legs at the moment and I have two endometrioma cysts on my left ovary, they aren't very big tho so I don't think they are causing my pain but could be causing yours? Also do you take any vitamins to help fatigue? I take iron with multivitamins everyday because my periods are very heavy and I suffer from tiredness alot x

[Minitrooper]

Hi Starley, just want to say I feel for you. I am in the same situation. The daily agony, irregular bleeding and the feeling of a dead person are driving me mad, but there is still no date for my laparoscopy, therefore no hope for change.

I really don’t know how much longer I can keep waiting like this. I don’t know what I can do to either. If we change consultant or hospital, does it mean we have to start from the bottom of the wait list again?

Lots of hugs!

[Raya88]

Hi Starley, I know exactly what your going through I'm in the same boat at the moment! I was diagnosed 21 years ago and I've literally begged for a hysterectomy for last 5yrs. I was booked in 4 times last year for hysteroscopy/lsporoscopy to see how bad it was ( stage 4 last op) each postponed and then should have gone in April but was postponed again! I'm on mefanemic acid, naproxen and zapain for the pain I've had 8 ops in past and I'm done! I want some kind of normality back I have lived with this disease for the majority of my life on a daily basis and tried most treatments to no avail. I'm on so many painkillers now I know they're not working they way they should be, passing out with the pain and constant fatigue. Draining to say the least. I hope once things get moving with NHS that they give me a full hysterectomy no farting around. I've already had it lasered...cut out etc ( 2016 I was actually stuck together quite bad) so I'm hoping Gynae pushes through full hysterectomy.

I've been told countless times I'm too young for full hysterectomy even when on floor begging! I'm 35... just... but have had this since the age of 12 diagnosed at 13 after emergency op so I've never known not having it!

I do have 3 lovely children after alot of complications so I'm not planning on having any more. I would give my left leg not to be in this pain every day and to be able to just get on with day to day life....but every endo sufferer will know it interferes with EVERYTHING. I know that when I finally have the OP it WILL help with my depression aswell that's a fact.

Nobody will know what your going through except other endo sufferers,the pain even though invisible to some is the worst kind of pain ever. With every contraction, cramp and tear I know my OP cannot come quick enough and I pray its sooner rather than later, for my children's sake.

Constant pain and feeling sick ain't pretty and it's not nice heaving each time you have to take a handful of bullet size tablets! I hope they speed things along for you aswell as the rest of us who are in limbo at the mo. Fingers crossed!

[Dinky26 in reply to Raya88]

Where abouts do you live? I live in Nottinghamshire and when I saw my consultant for the first time she gave me a internal examination (which really hurt) and she said my uterus is hard and fixed and told me to think about a hysterectomy straight away! I was diagnosed via lap in 2009 with endo but haven't had any treatment since. They found a endometrioma cyst on my left ovary a few weeks ago so that's why I went to a gyne. I turned 34 last week and defo don't want a hysterectomy yet! If you live round here maybe you could go see her? Seems to offer them out like hot dinners lol

[Raya88 in reply to Dinky26]

I'm in North Wales hun....or I'd be banging on her office door lol I've been stage 4 since they found it and it wasn't too bad after having the kids but after a couple of months would be worse than before. I've had that many Consultants over the years they have all had different opinions on hysterectomy, when it was first discussed I was devastated. I couldn't imagine being so young and having bits missing. After alot of thinking and next to no break at all with pain it was a easy decision to make. My kids need me more than I need my bits.! Seeing them upset and sometimes frightened by pain I'm in is heartbreaking. How can I reassure them I'm ok when I'm crippled. I think they're used to it now, pains there all the time and constant. I would definitely hold off on her advice though and ask for second opinion as you may have some options available. I wish I had a choice but I can't wait to get rid now. Every day the pain makes me feel sick, the longer I'm waiting the more scared I am that it's something serious they find on next OP. I'm hoping once my bits are out i might be able to live life properly and pain free. I forgot what that feels like!

[Dinky26 in reply to Raya88]

I'm in pain every single day too, but not pelvic pain. It started in my left leg/groin and then spread to my other leg, then up my front and around my back. Now it's tingling everywhere and my hips and back are so stiff i can hardly walk my legs feel like bricks. I dont have period type cramps unless I'm on my period but gps are trying to blame my pain on the cysts I have but gyne says it can't be them causing it but still suggests hysterectomy :/ I don't feel like anyone really cares! It sucks to be in pain everyday and if I knew a hysterectomy would take it all away id have it done but I know it wouldn't. It would just cause me early menopause and all the problems that come with that plus id still be in all this pain! Hope you get somewhere soon and its a shame you don't live down this way because she'd defo have your bits out in a flash lol she must get paid extra or something!

[Raya88]

Aww its crap isn't it. Unless you live with the pain yourself it is hard to understand. If I was you I'd ask for some strong painkillers if you haven't already been prescribed them and ask for cysts to be removed before hysterectomy. I've had cysts removed on nearly all laparoscopys, so if wouldn't be much bother to remove them I wouldn't think. And I would ask what your options were aswell as there are treatments they could try that might help. I was told I'd never have kids because of endo and PCOS but I have three lovely kids now, 12 10 and 3! Wasn't without difficulty tho and lots of tears along the way. I've also had a twisted fallopian tube aswell so please don't give up hope just yet! I'm pretty sure I don't have any options left now, but rattling round like a pill bottle isn't a option anymore either! It's taken over every day of my life, and I just want to have a chance ( not expecting miracles) of being pain free and not being a prisoner of this horrible disease. Alot of gynaes don't know how horrific it can be living with pain etc every day but if you can find one who does they maybe more sympathetic and help rather than take away the problem for quick fix! I've given up explaining pain to gp and plod on best I can hoping I will go in for OP asap. Wishful thinking 😩