Iām aware of the waiting times. Iām aware how many women are suffering. But itās 14 months Iv been waiting for a surgery date for quite severe adhesions around my bowel loops, from my vagina sleeve (hysterectomy-ovaries left behind) to my bowel and a complex cyst on my left ovary growing onto my bowel. Iv mentioned for years about niggling diaphragmic symptoms but now they are quite loud and painful.
The gp I just spoken to trying to get me to guess how many expeditions she has been asked to write this morning!! They wrote one in January for me but my consultant has made and cancelled 3 appointments in that time!
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Maviscat01
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Its a joke it really is xMy GP did a letter too a few weeks back and I got a letter from gyne to say I was on the list and should hear from them by 5th May and dont contact unless I dont here by then!!! Its been 12 mths now and thats even after I paid to see a private one who put me on his nhs list.
Nhs is on its knees it really is. I know they need to priotirste stuff like cancer etc but gyne issues are effecting womens fertility mental health its not something that should just be pushed to the side x its like they want us to just go and pay for trreatment. Really wish I had health insurance! good luck hope you hear something soon x
Hi Maviscat01,Sorry to hear your not having a great time, but just know your not alone, I had to wait 2 and a half years for my surgery due to the pandemic, I think they are trying to see as many people as they can but it's still not great! It might be worth getting in contact with PALS and see if there is anything they can do to help you, I know it's not what you want to hear but hopefully you will hear something soon, just try and keep positive, good luck xx
I know someone, who after having a lap 2021, got a hysterectomy offered in 2022, and got her date within a month for May this year š¤£! The NHS aināt on their knees! They have a quota to fill! So the easy patients are going first!.. This girl has a bit of pain, while holding down a full time job, raising two kids and out on the lash every weekend! But sheās suffering terribly š¤£
Yes! I know a few on my Facebook who have had exploratory surgery for minimal pain, Iv taken myself off Facebook and Instagram etc because it was mentally effecting me when I see everyone posting about there full lives and I have to take morphine and help just to do an hours shop!x
I think sometimes it all depends on what you need done, I had wide spread with my bowel involved so needed endo and bowel specialists at my surgery which is why mine took a bit longer to happen, I had a full hysterectomy and endo removed, and I can honestly say so far it's the best thing I've done. I think u have done a sensible thing by removing yourself from social media, I know it seems unfair sometimes but there is always a bigger picture behind the scenes, just try and stay positive and think that they do have your best interests at heart (sometimes this is hard to believe!) If I can help with anything please message me, good luck on your journey and hopefully it will be over with soon xx
But that just isnāt true! Not in my case! I was opened in 2016 to discover I had very severe Endo! Stage 5 severe! I was then kept on 3 monthly consultations up until I almost died! To then be offered further surgery! Which would need 3 surgeons! I would get it within a year! Well now itās 2 years minimum! Iām looking at a colostomy and bags for my kidneys as my Endo was never ācuredā, nor ever responded to medical treatment! It actually wasnāt expected too! This girl isnāt āsevereā, thereās nothing I donāt know about!.. I am, however way past severe! Canāt complain too much though, Iām still just about managing a part time job! Itās a joke, nothing more, cuz lazy surgeons would rather deal with the simple cases, rather than the complex! My hospital told me such, after I kicked off xx
Thatās another thingā¦ ā oh yeah I had that, they burnt it off and Iv been ok, apart from painful periods ā then they look at you like your crazy because they HAD endometriosis but they been cured so why am I complaining! Oh and why am I complaining when itās not my period because I had a hysterectomy surely that cured it and I donāt have cycles anymore?!? My right ovary is missing and my left is attached to my bowel with adhesions and a mass. Non of my endometriosis was ever on any of my reproductive organs.
I had 3 laps before they found my endo. The first time they found it they said it was minimal and not the reason for my pain. By the time I was seen by endometriosis specialist they still didnāt believe me and put me down first on the surgical list because they like to do the easy ones first to get them out the way. I was in surgery for 6 hours! It was transvaginal and transrectal plus all over pelvic floor and walls. They gave me a hysterectomy a year later because my womb looked abnormal but left my ovaries because I was 33 at the time. Iv been on no treatment, no help, nothing. Then when I asked to be referred to a different team they said they are reluctant for more surgery because Iv had so manyā¦ like thatās my fault? Like my goal is to get as many operations as possible! What is most frustrating is that I have been diagnosed with an in-curable disease yet I still have to jump through all the hoops and tasks to prove itās not something else causing the pain. My bowel is damaged from surgery, I canāt poop without suppositoryās regardless of consistency of the poop, they told me thatās digestive problems not endometriosis problems! Iām sorry Iām ranting, not said half of what else is going on but Iām so frustrated
Itās an absolute joke! I wish I only had painful periods!
Iām like you, my ovary too is stuck to my bowel with a mass that has eaten through it! It was left there at my last surgery 6 years ago! That abscessed! Sent me packing to hospital with sepsis! My health was so poor at this point I have never recovered! Oh but at least the simple people get the help they need! We however have to suffer on and on! Cuz supposedly it isnāt deadly? š¤·āāļø! Not sure why I almost died from complications though!
Honestly itās sickening! People like us SHOULD come first! Why canāt those with a painful period not try 6 years of treatment, like how I did! My type is known NOT to respond to medical treatment, yet I was forced through it!
Resources should go to those with severe disease! Those with mild disease should come last!ā¦. Xx
I think back to the times, around the age of 16, when I woke up every single day in so much pain I felt physically sick! Couldnāt stand for long periods! Couldnāt sit for long periods! I wasnāt diagnosed until 31! And I swear to god I wish I could go back to those days of daily pain, so bad I felt sick! Cuz thatās nothing compared to what I have today! I was a very accomplished horse rider/trainer to the point I could break in/school on any horse with my hands tied behind my back! I was fit, strong, athletic! I was also a full time cared of my father who couldnāt even tie his own shoelaces!
I woke up around 8 everyday, didnāt stop til around 9 every night! Then Iād be out three nights a week!
Iām 37! I work 3 days a week and sleep for 4! Itās not just pain! Itās the fatigue! Itās so bloody bad itās so hard to even put into words!
Iām not even a shadow of my former self! All because of the fāing NHS! š¤¬ xx
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