Feeling blue

[Bekie84]

For the last few days now I've really been struggling with things. I cannot wait for my hysterectomy and finally be done with this I hope. I am non stop feeling sick with that much pain. Hope all of you ladies are ok xx

[Starstellar7]

I'm the same at the moment Bekie, I am getting very fed up with having to keep going in a busy job with pain everyday. You aren't alone. What pain relief are you taking? xx

[Bekie84 in reply to Starstellar7]

It's so hard to get on with everything isn't it but us being women seem to manage I've been on all sorts of pain relief and nothing really works so I have come off all of it as I'm not going to keep dosing myself for nothing so im off all of it and waiting on my operation. Are the doctors helping you or is it a never ending battle x

[Starstellar7 in reply to Bekie84]

Bit of a battle at the moment. I had a lap in May due to bad pain and my appendix being involved with adhesions forming. (Had a cyst out prior to this.) Now ttc and the pain is getting worse. I've seen two gynaes and they are both useless. Just told to keep ttc and see what happens. I am taking a lot of pain killers and the pain is starting to feel like it did before the op so I think my right ovary is involved as well. I don't think I am going to conceive at this rate. I think I will lose an ovary and then the greedy Dr will get another patient who has to have IVF. I am starting to feel quite angry about it all. I work FT in a stressful job where you have to be on the ball and the pain is stopping me sleeping properly. Just very worried about the future right now.

What's happening with your operation? I hope you have more understanding Drs, my gp is great but all she can do is advise.

I hate the fact I can't talk about it much and noon understands that while they are tired I just want to crawl into bed when I get home everyday. Hardly any quality of life. Can't drink or socialise as the weekends are spent resting so I can cope with the next week. Its crap. Sorry to moan

[Bekie84 in reply to Starstellar7]

We all need a little moan so don't worry moan away anytime to me. My friends aren't understanding of it and my husband tries to but obviously no one can understand unless they go through it. It's horrible that the gynaes you have seen are so useless it does make you angry. I'm having a full abdomonal hysterectomy tubes ovaries the lot I have literally tried just about everything so they are cutting all endo out and removing everything. I'm so nervous I have 3 children so am blessed to have had children before this completely took my life. If ever you need a chat message me anytime I will help anyway I can. Is there any endo specialists near you xx

[Suz213 in reply to Starstellar7]

I'm in s similar position to you - had first lap in February which they found endo and my right ovary had gotten stuck to my pelvic wall. Had a few pain free months and the pain started again. Was convinced the same thing had happened again. Was back and forth to see my doctor and eventually referred to the consultant who performed the lap in feb. He was reluctant to do anything at first as he didn't think the endo could've come back so quickly or that my ovary could've gotten stuck again. Had lap last Monday and it has happens again!!! They've put anti adhesion gel in to try stop it happening again. Consultant has recommended that if it happens again that they remove my right ovary which isn't the best news as we are ttc and also the amount of time off work I've had already because of this. i think you need to listen to your body and be persistent with the doctors - seems to be the only way to get anywhere. X

[Starstellar7 in reply to Suz213]

Thanks Suz213, I am just very fed up with the lack of decent advice from the gynaes that I have seen. I actually ended up going to see a second consultant because the first one basically said not much we can do. All they have done is told me to get pregnant and sent me off with a big bag of high strength painkillers.

My concern is that every surgery seems to make it worse, this will be my third lap if I push for it. I had adhesions last time and I know that adhesions are made worse by repeated surgery. I am also worried about the time I will need to take off work. I'm off today as I've been struggling for the last week with really bad pain and no sleep, just can't keep going.

[Bekie84 in reply to Suz213]

I know they don't seem to want to listen but you definately have to keep pushing we don't deserve to be fobbed off I hope you soon get some good news with it I'm here anytime you want a chat xx

[Starstellar7]

I'm lucky enough to have private medical care, but they still aren't doing anything because I suppose there is nothng that can be done right now just keep trying, but each month it gets worse. It must be daunting have the full operation? Will you have HRT afterwards?

If we end up having to have IVF the bill will be huge here and I don't want to go down that road.

I'm glad you've had kids first. That and the pain are the worse two things about this for me. I spent so long avoiding pregnancy with no idea what was to happen. I thought I had this in my early 20s and was fobbed by the Dr so just kept taking the pill which reduced the symptoms. I feel like the system has utterly failed me. I should sue them!

[Bekie84]

it is daunting having the full operation and yes unfortunately I am going to have to go hrt afterwards which im not looking forward to. you must be in such a mess in your head right now with you wanting children and the fact it might have to be ivf. Endo is such a nasty disease it really takes a womans life. I was going to sue the doctors earlier this year as I had a lump in my stomach that was so painful and made me so sick and they kept fobbing me off no one knowing what it was they then after months decided they thought it was my appendix so gave me an operation to take my appendix and was told when they open up for appendix even if they look normal when they go in they still take them. I came round being told they had taken them and then got told they hadn't and it was to do with blood build up in pelvis. then I finally got under a decent professor and he took me in removed the big lump and I was told they were testing for cancer I was a mess. It was cancer just a massive build up of the endo. I now have lump back again and am in so much pain they gave me decapeptyl injections they didn't help made me so unwell and I bled constant so came off them so now waiting for hysterectomy im so scared and what if they do not get all the endo it means I have gone through it for nothing. I know its hard but keep fighting them and don't let them keep fobbing you off they tried with me with the lump I kept going until someone sorted it. I feel that there should be more help for endo sufferers and those who have not had children and have been put through all this should be given ivf free its not our faults this nasty disease has took over and the docs leave it and leave it until it gets worse and its too late. I feel like im moaning now but its horrible what us ladies go through and there is no help for this nasty painful disease we are expected to get on with it and get fobbed off with pain killers that don't really work. xx

[Starstellar7]

Completely agree Bekie 84, I'm just concerned about my future. I'm working ft at the moment overseas and its very stressful because I have to work to get medical care etc. I'm from the UK and my husband is from Australia, if I can't work it puts us in a bit of a dilemma. Also means I have to pay for any fertility treatment I may need, 9,000 pounds a go apparantly for IVF here. I think we may end up looking at moving again and this is very stressful. Very fed up.

I hope your op goes well. It is very scary, any kind of surgery is worrying and it can't be easy feeling ill with three children. Is the lump around scar tissue? xx

[Bekie84 in reply to Starstellar7]

I really hope things work out for you you work hard and I really hope you are able to conceive Ivf is such a long expensive process and so stressful I really do hope things look up for you. We are all here for you I know we can't do much for you but to talk to people who are going through this really does help. Thankyou for your kind words about my op I just can't wait to get in and get better from it but am so scared I was told no later than January but heard nothing yet so having to play the waiting game again xx

[Clarence80]

Hi ladies, so sorry to hear you have both had a rubbish time with health professionals. I have had incredibly painful periods since I was 12ish & had also been fobbed off. I have been TTC for 2 years & because of my unexplained fertility I had an internal scan which showed a mass if endo on one of my ovaries. This was removed during my lap but there's loads in my fallopian tubes (although they weren't blocked 6 months ago). Like you both, I am frustrated & angry at the way I have been fobbed off for years despite me begging people to check for endo. Being told pregnancy or hysterectomy will cure me is completely inaccurate information also.

I have complained to PALS who are now investigating my claims & I will hear back at the beginning of Jan whether I have a case.

I definitely think it's worth it to complain to them as health professionals need to know more about endo & how to treat it. It's tiring enough having to deal with this condition without having to fight for a correct diagnosis & treatments.

I hope you all have a lovely Xmas which is as relaxing as possible. Xx

[Bekie84 in reply to Clarence80]

Hi it's horrible so many ladies are going through the same. I also complained to pals but it got me nowhere I really hope you have more luck with how common endo is now they should have the gynaes trained better in it and do more research into what does help I am distraught that it's now come to hysterectomy and still this may not cute so many women get desperate to have it go away and the gynaes say hysterectomy but mine have never said this is not a cure 100% and you may still suffer I have had to find out for myself it's disgusting xx

[PainfulMe]

I've been feeling the same way recently... and told my OB the same thing... My surgery was scheduled in November, and then put on hold because of weird liver results that showed up on an ER visit... I walked in off the street begging to be seen by my specialist...And am now back on the surgical track.... That and fighting for long term disability... I am at the end of my 'happy'...

[Bevsymon]

I was told radical hysterectomy and ovary removal along with excision of endo would be 90% chance of endo not returning so just went for it - I'm 2 wks post op feeling good and managing menopausal symptoms well with diet x

[Bekie84 in reply to Bevsymon]

That is really positive to hear I hope I have the same success next month thankyou so much for sharing that with me as I am so worried and been debating saying no xx

[Bevsymon]

I walked around the block today and it felt good hip pain left pelvic pain etc gone completely even upon awakening from op i was very nervous beforehand but feeling confident for the future - if you have any questions just ask x