Fed up..... I hate this stupid condition. Who feels the same... Rant below.... It might make us feel better

I don't normally do a woe is me in a daily normal life but I just need a faceless moan..... I'm sick of pain, I'm sick of the bleeding, I'm bored of endometriosis, I'm bored of the circle that is the endo pathway when your consultant uses the age card as I'm only 35.5. I hate this course of prostrap (third time on these). I just want to be me again... Sorry ladies but I just needed to post and vent as no one on the outside understands they just think I'm a miserable moo x 

26 Replies

  • hi emmalou. i really sympathise with u. i too am 35 and had a 3 month prostap injection and it was terrible. i couldnt believe how bad it made me feel psychologically never mind the usual menopausal side effects. it is important to get friends and family on board to support u through it. how much longer do u have to have it for? are u awaiting surgery? x 

  • Hi dawntildusk, this is my third course (I have eight to ten month rest breaks inbetween each 4 weeks for six month doses)... Unfortunately my gynae will not operate yet so we are "medication treating" with laps and scans every now and then to  check on the cells (I'm not even starting on that rant lol.)

    My family are fab but unless you are wearing our footwear for the day you really don't understand or comprehend our daily battle)..

    I went to the doctors today re: the mood swings... Big girl pants are back on. xxx

  • wow thats a lot of prostap. thought you shouldnt have more than 6 doses ?!? must be really hard for u. i crumbled after 3 months so u deserve a medal for how long uv had it for. how come they will only treat u medically?

  • They keep saying I'm too young for surgery. This is another thing that's grinding at my core.... Everyone is treated differently. Why can't there be a clear pathway for treatment. I don't understand 😞

  • Plus the Prostrap.... Apparently if you have 8 months to a year gap in between your six month 4 weekly injections it's "safe"  so I am told..... On the fourth sixth month dose you need bone scans (again that's what I'm told). We all need medals..... We are all brave endo soldiers x

  • there are nice guidelines which should be followed depending on the severity of your endo. have u been told what stage it is? i think it is imperative that you get yourself seen by a bsge specialist especially if u are not happy with the treatment you are receiving and if it is not improving things considerably. there is a lady on here called lindle and she is a font of knowledge. maybe u could message her your history i am sure she would be able to point you in the right direction. 

  • are u taking hrt whilst on the prostap?

  • No one has ever mentioned a stage (again learnt that from here you are all fab). 

    That's the very first question I am going to ask when I see him.

     All I know is that the cells are womb uterus and most recent (as in the last six months) it's also moved into the left ovary and the right tube looked enlarged slightly). 

    Why do consultants speak in such ways.... Why can they not just say "come on love let's have a brew.... There is sticky stuff throughout your lady garden and this is what we shall be doing). 

    I also never knew about the centre. My list of things I want to know is HUGE now thanks to you gorgeous lot. 

    I'm on hrt but it's just working. I went to see my Gp this morning and she is writing again to my consultant as apparently there is no way I should be showing blood on pro strap and she doesn't know what to do... So by half nine this morning I had a full top and tail grope before even starting work. 

    Please please please can I encourage anyone on these or any other injections containing hormones with hrt please please check your boobies x 

  • morning emma. please do a little bit of research into the bsge centres and make sure that u ask to see one of the named specialists. it is not good enough to just be going to that hospital as i have learned. general gynae do not have the knowledge , experience, and skills to treat this disease. pleaae dont apologise for venting on here. this is what we are ALL here for. it certainly does help to have people with the same condition to talk to x 

  • Thank you dawntildusk . I am definitely going to ask my consultant to do a referral. thank you so much for your help. I hope you are feeling better today too xxx I will drop lindle an message xx

  • Hi, sorry your feeling so low, I do know how you feel, I've had a lot to deal with over the last few years, lap in march last year then a hysterectomy in July for adenomyosis, still in pain most days, and if is very wearing,

    Are you being seen at a bsge centre?

    Where is your endo? 

    And what is your plan of action, ?

    I'm on zolodez 6 weeks in, and I think I'm having a few more mild days, but still feel crappie loads, I'm waiting another lap to see what's happening inside, I was operated on by general gyne, and I think he has missed something, should get op within the next 2 months, 

    Hope you feel alittle better soon, xx

  • It's in my womb and uterus and ovaries. No not yet. I didn't even know these clinics existed until I joined this group so that's my next conversation when I see my consultant in a few months. So far I'm being treated with numerous sessions of prostrap and laps and pain blocker injections in my pelvis. I think they just see me as a pin cushion. 

    I hope you feel better soon too xx

  • Sympathise Hun, it really is crap, I'm in loads of pain today too, and really don't want to go to work.  I'm waiting for appointment to see consultant, I have endo and adhesions had op in 2012 to remove and detach everything as uterus was attached to adominal wall.  I was lucky to have about 18 months pain free before it slowly returned and now really bad again, GP examined me and she says seems like it's all stuck again.  I'm 37 and have a 10 year old daughter, so hopefully will operate again. X 

  • Big Hugs, I have a beautiful little boy and I don't want any more babies (and haven't since the day he was born seven years ago)

    I hope your pain settles. My GP is fab and so is my consultant but I am just done with the whole thing...

  • I totally understand. Im done with endo too. I'm sick of all the painkillers and the rest of it. Don't worry about having a rant it's good to get it out there and we're all here to listen. Hope you start feeling better soon x

  • Thank you you wonderful ladies.... I wish "normal" people could feel our normal day just once. I have onion rings and wine to make me feel better (I know a real classy combination). Happy Friday and thank you for reading my early rant X 

  • Endo is the worst I had a lap last year at 22 to remove it as I bleed for four years straight , and symptoms are already coming back , feel like I'm in a constant battle with my own body X 

  • It's rubbish. I hate it. Sending tiny warriors to help the battle. X 

  • I agree, every so often a good rant/ cry/ angry burst is needed. It usually Spurs me on to do something to try and make me feel better. Sounds like you may benefit from seeing another consultant if you're going round in circles. Good luck 

  • Thank youxxx yesterday was a very rough emotional/hormonal day. Thank you for reading my rant x

  • Aww that sounds like my Thursday - I cried for a lot of the afternoon after having a consultant appt (they were great but my endo is so severe there is little they can offer at the moment as I had major surgery 6 months ago). I cried quite a bit yesterday too. But I'm feeling a bit better today so I'm sure it does help. It spurred me on as I've booked myself in with a nutritionist and bought myself a Fitbit to try lose some weight and manage my pain in ways other than medication. Also going to request a referral to physio through my GP to see if they can do anything for the pain also. There is nothing more helpful than a good cry rather than bottling up your emotions in my opinion. 

  • Aww. sending positive hugs and thoughts to you. I was an angry sad yesterday. I hope today is a better day for you too xx

  • I hope they shape up and listen to you soon. Sometimes you just have to be really firm and insist but it's hard going when you're already worn down by endo symptoms :-( 

    I was discharged from my consultant after seeing a stand in gynae and he basically told me I am a normal healthy cycling woman... and then I informed that I'm not because I have endo... so he then replied with 'OH, do you? Well you should go away and have children very soon because I don't want to see you in my fertility clinic because you have left it too late'

    I just left. Didn't have the energy to argue the toss. I'll just stay on my cocktail of drugs and take the bad days with the good.

    This condition is the bane of so many women's lives. I bet with what we achieve with endo we would be superwoman if someone could take away the endo from the equation!

  • Oh that's terrible. It makes me sad when they do this. Sending hugs x

  • I am so over it and don't even have a diagnosis!!!  I have cried every night this week on getting into bed as it's so painful, can't turn over blah blah blah and this is the better half of my cycle!!! Despite having loving family and very supportive partner I have never felt so lonely.  When it comes down to it, its you versus the pain, fatigue and all the other symptoms which can make you feel so isolated....

    On a positive note I learned how to knit last night!! I thought would be a good way to distract myself from the pain.Theres me thinking oh it can't be that hard, and I will create a cute new toy for my son over the weekend..... Well I managed to cast on, and make 3 wonky rows... Hhhmmm seems it's going to take me a little while longer than I thought... 

    Wishing for better days for us all xxxx

  • Yes Emmalou! I completely agree!! And there's nothing wrong with a little rant now and then, it's healthy! :) xx

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