Suffering the symptoms of endo but doctors unwilling to help!

[abdab12]

Hello!

Been suffering from the symptoms of endo for a few years Now,my GP referred me to gynacologist, had all scans and swabs. I was told it might be polisistic ovary and endometreosis. Been back to my GP today and they are unwilling to do anything the try the pill again which I've been on for 5 years and it hasn't helped, or I've been offered a coil and pain relief. I don't really want it masking,I want to know what's wrong, they're saying it could be all down to my bowels so I've been started on mebeverine again as Well, even though that wouldn't explain all the symptoms I have? Feeling very fed up because my GP doesn't seem to want to do anything, this is my 4th gp. Does anyone know of any good private gynacologist in South Yorkshire? Or can advice me on what to do? I feel like I'm going round in circles, it's effecting my quality of life, I've had to take a break from uni because I'm struggling, I just want something sorting now

Thanks in advance x

[Alessia]

Hey there deary! How are you doing today? I hope that the severity of symptoms is lowering! I am really sorry to hear all this... The hell is it with your doctors. I get that they are humans just like us and that they get tired but... God dammit too much is too much. Have you thought of going some other clinic or place? I don't know what type of place are you visiting but they dont seem to work... Maybe look for a private hospital or something similar... They are usually more expensive but they try to take better care of you. If it doesn't affect your wallet tremendously than it's all worth it... Taking piles and piles of painkillers isnt a great option. Sorry that i couldn't help any further! God bless you and may you overcome this soon.

[princessk09]

Hey, my gps weren’t listening to me for the last couple of years. I went to an endo specialist at spire in Manchester and it cost £214 but he knew what he was talking about, explained everything (I felt like I was in a sex ed class though haha). He listened straight away and took into consideration how much it’s affecting my career etc.

Unfortunately I couldn’t afford the private lap so been put back into the nhs for it which is a 23 week waiting list in my area 😫 xx

[Hidden]

I was in a similar position to you, got put on pill after pill to 'try and stop it hurting' when all it did was make me so much worse. When none was found at my lap (after years of pushing for one) I came off the pill, which was the best decision I've made, and am having my bowels investigated as I found a huge correlation between pain and the food/bowel movements I had.

I know a lot of people have it midsiagnosed as a bowel condition, namely IBS, and I know the symptoms are very similar so it might be worth going through with the bowel testing and seeing what comes back (the pain I had for 4 years in what I thought was my ovary turned out to be a dodgy bowel!) I was told I just have heavy periods as well, on top of bowel issues which is what made them think it was endo, which would make sense as I've always been like clockwork and never any breakthrough bleeding. It's definitely worth exploring all your options and not giving up! If the gynaeo thinks it's endo could they not refer you themselves? x

[Kathy_Page in reply to Hidden]

Hello, I too have suspected endo, not has a lap yet but so far nothing was found. After reading your comments, it feels like worth checking my bowels.

Did you used to get pain in your left ilisac fossa? Almost daily. Worst during pms and periods? How we you diagnosed finally.

It would be very helpful if you could let me know as I get pains all the time.

[Hidden in reply to Kathy_Page]

Not sure where the ilisac fossa is but I've had a constant pain sort of in my right hip joint for the last 4 years, comes and goes in terms of severity but is always there, worse before period though (was told these two are closely related too) and when I eat certain foods. I cut out all gluten and dairy and they told me, when the pain got better after that, it was probably related so had blood and stool samples for ibd, and nothing as found so about how I go see a gastroenterologist for IBS treatment. Honestly coming off birth control has been a lifesaver as the pain has decreased loads, but I'd never thought it was bowel related as I never had toilet issue, just this pain!

[Kathy_Page in reply to Hidden]

Yes same for me no other symptoms, but I have periods pain and pms though. So I should also show to gastroentologist as well.

[Hidden in reply to Kathy_Page]

All depends who your doctors say to refer you too I suppose as I've not really had any choice in it. I've had stomach issues since I was a child that was put down to anxiety when it was really intolerances and then it led to an eating disorder do I've been seen through various people, it was only the lack of endo in my surgery and the consultant and gynae saying that the pain I was pointing too was more my bowel, and going back and asking the doctor's after that if they could do something, that got me this appointment

My periods are pretty bad and heavy, like to thank point of needing days off work, but now I'm off the pill I'm hoping they resettle and sometimes you've just have heavy periods anyway as it's a condition on it's own, plus my womb tips back onto my bowel which is how the two can relate x

[SadieMae_1kitty in reply to Kathy_Page]

Hi,

First of all I am so sorry you are dealing with these awful health issues, I have sciatica pain daily! started about 3 years ago with severe lower back pain, ovarian pain, very heavy periods, since then I have had 2 colonoscopies 1 sigmoidoscopy that reveal NO GI issues! finally after visiting ER twice in one weekend last month due to severe rectal bleeding, extreme pelvic pain was told by both ER Drs endometriosis put on birth control pill, after seeing OBGYN and ultrasound found multiple uterine fibroids, I'm on wait list for Hysterectomy. Honestly the periods are bad, however pill can control.

The bowel issues are unbearable!!!!! I don't understand why it is so hard for specialists to get together and get this figured out!! the uterus and bowels are so close!! We all continue to suffer. The brat diet helps me, applesauce toast, bananas and rice.. Good Luck to you all and God bless you all with a caring provider and strait diagnosis.

[Hidden]

Hi I’m really sorry to hear the GPS aren’t listening; I’ve been there and it’s awful not to feel listened to when suffering so much.

Your gynae should arrange a laparoscopy to rule/treat endometriosis; you cannot diagnosis it without a lap. What tests /investigations has your gynae done?

For someone who suffers nearly 6 years of infertility and many years of abnormalities like my infertility were unexplained. Thankfully my fertility specialist suggested a laparoscopy after suffering chronic pain; this led to a diagnosis of endo and I wish I had it found much sooner. I don’t know why we are left suffering for so long. Originally my fertility specialist believed it was bowel in origin before he found endo; I had both gynae and bowel issues which made diagnosing harder.

I agree with other ladies; push the medics you know your body better than any doctor does. Trust your instincts 😘

Sometimes it helps to take someone with you to appointments; you less likely to be fobbed off.

Maybe if you can’t get anywhere with the current gynae can you see a private endo specialist that works privately and NHS ; so if the specialist thinks you need a lap can refer you to their NHS waiting list.

Good luck really hope you get answers to the suffering. xoxo

[Hidden]

I'm in exactly the same boat as you, feel free to message me if you want a chat xxx

[SadieMae_1kitty in reply to Hidden]

Thank you, hope you feel better soon.

I'm scheduled for surgery in July. I'm ready. Feel free to chat or reach out anytime. xxx

[wabbit]

Ditto. Ive had bad girly problems from age 14 now 33 and i keep getting fobbed off. Ive been called depressed and put on pills. They questioned my home life asking if id been abused blah blah and its only now that i read other ppl that i understand ive suffered endo altho i havent had a clear answer yet either. This past cpl of days has been esp bad with sickness cramp backache headaches blurred vision n tiredness not to mention my bum troubles that ive made another gp app trying to get help but im fed up aswell. Im scared now that ill not have kids and reading you can get it in bowels n the syptoms ive been having are identical...

My ex hubby left me partly bcos he didnt understand and his affair was easier than me i suppose. I dont want my partner now to have to live with this and its getting much worse. I hope u get help and if u need a friend im just up in NE x

[SadieMae_1kitty in reply to wabbit]

So very sorry.. This is absolutely terrible, this will definitely take it's toll on a relationship.

Thank you for sharing I feel it helps with healing. x