Jalo69 ? Does anybody else have upper left abdominal stabbing pain??

Dear all, i cried when i found this site at the weekend. Ive got to the stage where i feel i cant keep bothering my wonderful family and friends with my woes anymore so speaking to others who understand and want to listen will be my saviour for now:)) I cried because I thought I was being ridiculous,consuming my every waking hour thinking about this cruel disease, going barmy, i thought, but low and behold..Im not alone after all, its real and it does play mind games, you will understand that!!! Hello people, this is my story.....

Im 43 years old now and growing up,getting married having children was easy. Periods were nothing unusual i was able to conceive within a month of trying for both my children. I had taken the contreceptive pill for years,then things started to change. Hubby had a snip after no.2 child came along. I no longer required the pill so why put things into my body when not needed. My son was born by C-section and this, i believe has been the start of my endometriosis story. I cant remember when they started to get worse i think it was gradual but crickey i knew it when the perods had become intolerable.The PMT was frightening i didnt recognise myself and the anger that flew out of my mouth was awful. It was uncontrollable and the pain of the menstration was crippling as you know. I continued for a while, then one night i went to the loo and fainted. This scared me as i had never fainted before so went to see Gp. Explained my symptoms but no mention of Endo. Unfortunately it wasnt my own GP, had i waited another day my story may have been different. Anyway i asked i f i could try the Mirena Coil for the periods, he said wouldnt be a bad idea so i went straight to Family Planning 2 days later and as i was menstrating at the time the did it there and then. For me this was my saviour well for a year anyway. After months of very slight bleeding whilst it settled down i was period free and have to say 4 years on still am. No painful monthlys and the PMT gone. Brilliant. A year later i began having pain on intercourse. Hmmm better go and see Doc. Saw my own GP who straight away felt a mass on an ovary. Had a scan which confirmed this. I was now 40 years old. Got referred to Gynea and then admitted to hospital for surgery Feb 14th 2010. Great valentines!! So i had a laparotomy. Left ovary and fallopian removed had a 7cmx5cm endo cyst on it . Endo scattered everywhere and another 1cm cyst found in POD . my bowel had been stuck to the larger mass. After this I was relieved and thought that would be the end. The rectal pain started. I had a colonoscopy which was negative. I had 3 months of Zoladex which i found helped. This was used as a prossess of illimination. Then that stopped and the niggly clawing rectal pain returns. Have an MRI and it shows an endo mass on my rectum probably fromthe original one that was in the POD. After a couple of Gynea visits and other endo symptoms that were beginning to arise another op has taken place. This was on nov 26th 2012. My Gynea and bowel surgeon were planning on removing the mass but this didnt arise. Not only did i have scar tissue endo scattered around the place they found my ureters have got encased into the mass aswell and felt this job was for the endometriosis specialists. Stents have been put in the tubes to keep them open and to aid the surgeon in finding them. These have been giving me so much grief in my urethra. I have had 4 utis since and it constantly feels like i have something stabbing me all the time. Having a wee is like having knives twisting but i ve since bought some high concentrated cranberry tabs that have helped. Anyway last week had an appt. with specialists and will be having a full hysterectomy aswell as removing mass and any endo present. this is likely to go ahead in April. My latest concern is i have a stabbing pain in the top left side of abdomen. Im going crazy thinking its something worse but GP cant feel anythiing and feels it could be lesions. Has anybody else suffered in this area? Thankyou so much for taking time to read my history. My heart goes out to all of you and especially those that have suffered for so many years my story is nothing in comparison, but what i do know is this disease is a B....xxx

6 Replies

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  • I am glad you have found this site too... it sounds like you could do with having people around you who understand how you feel and the difficult decisions we face so Welcome!

    *hugs*

  • Thankyou so much Crystal. I hope being here will help with the anxiety i get with it.I find that the mind games it plays is worse for me so having a good old chat to anyone who cares to read and might relate to might relieve this a little. x

  • sounds like you have had a really tough time :( but you are most definitely not alone :) i also have pain in the area you describe but i dont think they have found (or maybe not looked) for endo there so i cant say if it may be endo related. i would imagine that the only way to know is to have another scan or lap. i know how you feel though at the moment i am in hospital almost every day having some sort of scan or test or treatment, consultation or op. its exhausting. hope that being a part of this community will help you feel better and maybe get some of the answers you need. its crazy how many people now are affected with endo even though most people still have not even heard of it or dont fully understand it . looking forward to hearing more from you in the future :) xxx

  • hi there thanks for kind words and im with you on the exhaustion of it all. i hope you get the answers and treatment that you deserve and that it comes easily.Somehow they dont seem to get it do they? because its not life threating it kind of gets put on a slow pace and scans etc are always months away when we need it now. The longer its left the worse it gets posing the possibility of more problematic surgery. The pace needs speeding up,we know its a ravage disease thats physically and mentally deblitating in its own right,why do so many GPs not listen to these poor women. Oh dear had a little rant there.:/ I have to say my GP has been fab but the process is sooo slow. Thankyou for sharing the pain issue im planning on writing on my abdomen 'X marks the spot' so they will bloomin well look this time. When i was in for surgery back in November the gynea said they dont look upper abdominal area and ususally requires different surgeons. This time im not leaving until they do :) Will update and yes this community is going to become my new best friend Regards xx J

  • hi jalo69,

    i shouldnt laugh, but your comment about "x marks the spot" was hilarious. i love your sense of humour and positive spirit :) and dont worry about ranting. its what i do best so you are not alone :D i hope that all the hospital visits achieve something to, but im losing optimism after suffering with this badly for past 8 years (diagnosed 3 years ago)- impressive timescale dont you think? (but lets not go there :P) i have more or less accepted i will never be pain free, but anything they can do to help me coke better is a plus. i really want to sort out my pain so its manageable. im supposed to be getting married in september and at this rate we wont even be able to consumate the marriage so to speak lol...oh dear :P xxx p.s. i actually think thats a great idea marking on your body where your pain is. they didnt listen to me the first time and so had a second lap only a year later in an area i already told them was painful and surprise surprise they found loads. seriously do it! lol xxx

  • Haha I feel a dare coming on!! ;) Have they offered you Zoladex. Its not used for lengthy period but it certainly made an improvement for me whilst i had it. Only for 3 months as an exploritry,trying to find out if the niggly,wriggly rectum pain was due to endo. suprisingly it stopped over this time. May be of help with your pending big day closer to the time if they havent sorted your pain relief by then. Of course there are pros and cons and what suits one may not another. Enjoy planning your wedding and consume your thoughts with this wonderful day put the 'MINX' to the back of your mind dont let her get in the way.Cross her off your invitation list ,shes not welcome and you will have the most glorious dayand oooh lala night;) Great to talk Im330 xx sweet dreams J

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