Any advice?

I feel like I'm fighting a loosing battle at the moment. I was diagnosed with endometriosis last September and have been on and off work since. A recent cystoscopy has identified inflammation and open sores in my bladder. I've been on a special diet for this and got no where.

After a lot of back forth with the urology department and my GP I've managed to get them to bring my telephone appointment forward.

I keep being told it's in my head, that I need counselling and it's not my bladder. One doctor went as far as saying I didn't even have endometriosis and that I was wasting the hospitals time as they won't find anything. It's frustrating because they have identified issues and I'm having to follow stages to get a diagnosis. The doctors know what tablets I need for the pain but they can't give them to me yet.

Has anyone else experienced this? How do you get through it?

16 Replies

  • Hi I'm so sorry for you're suffering

    It's awful to read these stories and each and everyone of us has the same or similar issues ... firstly change the GP or whoever told you it was all in you're head that's an awful thing to say to someone (sorry must have been a man!) people don't realise that us women get in with things and that we DO no r own bodies and when we feel it's not right that's when we ask for help and to be told after you have taken the courage to come forward for help that's it's in you're head is very very unfair I would write a letter of complain I really would...

    Ok I to have been diagnosed with endemetriosis but as I've stated in my other posts after years of horrendous periods and 1 yr of none stop basically I gave up and took the prostrap (depo) injection it totolay stops the period (I had been offered the coup but have a dropped low womb so couldn't be fitted) I had trananemic acid and mefanic acid for the pain but nothing above nothing stops the pain of the clots that pass due to the endo... and the best way is hysterectomy a big decision to make or coil or injection which takes 3 mi the to work but if amazing

    Can I ask what tablets there saying they can. Not It get you? As that's wrong you can go to the hospital youreself or another GP and say you need the prescription now and they should do it it's awful knowing something may be of help and they won't give it you

    Also have you tried any vitamins and woman's health tablets and they can boost you're immune system and make you feel better in youreself

    Listen there are a lot of us in the same boat as you and I do t mean that rude what I mean is we're all here for

    You no more fobbing you of you have us here to chat to anytime and just even if you thinks it's not worth a chat even the smallest chat or what you need to say can help you don't suffer this alone Hun

    If you need anything let me or any one here know we're all here to help ok

    But go back the GP and don't let them fob you of tell the hospital when you go enough is enough and they will help you

    Take care and keep us posted ok

    And here if you need a chat as I said xxx

  • Hi thank you for your message.

    I have gone to a different GP now. I've been through a few overy the last year and a lot of them seem to have the same opinion. It's extremely frustrating. Most of them have been men and they don't seem to understand the pain or anything. I've just been labelled as chronic pain syndrome recently and then the hospital found the issues with my bladder, so I hoping they will take it more seriously now. I'm due back on the 12th so I'll see what they have to say about things then.

    My GP won't tell me what tablets I need to be on. The hospital has told him he can't prescribe until I've finished my diet. So I've had to struggle along without any pain relief. As to say I've not managed to get into work for nearly a month now. I'm hoping that they will prescribe them as soon as I've been spoken to the hospital about the next stage in my treatment. It's anannying as my bladder symptoms are setting off my endometriosis and IBS.

    I haven't taken any yet no. What ones do you recommend? I could do with improving my immune system.

    Thank you that means a lot. I've not long joined this forum and it's been a God send. My sister has endo but doesn't have the same issues as me so it's so helpful coming on here.

    I'll keep updating this thread as and when I hear anything from my GP and hospital. I'm not going to be fobbed off any more. I'm going to stand strong and tell them what needs to be done. I've been doing it for a while and it's because of that, that the doctors found my thyroid was on the fritz and my bladder was inflamed. Got to keep pushing. 😊

    x x x

  • Hi it sounds like you're getting there a little now then as you say the 12 we'll make sure you take a pen and paper and keep note of everything

    Write down what you want to say and. Don't feel rushed to ask it -)

    Ok there is also tablets well health tabs from holland and barret called acidophilus there a food supplement but the boost you're immune and intestine as well 4 every other night before bed with cold milk I take amd they really work I also take menoupause plus from boots with botanics and they are every night you don't need other iron tablets with these there everything in them

    I take them every other night as they can make you poo! Sorry but there good to stop the night cramps and sweats etc and good for the immune system as well-)

    I hope you get all sorted Hun keep us informed if all else fails get the depo injection for ever as that works pretty good xxxx

  • Keep a pain diary. You can google for one.

  • Thank you. I'll look into starting one. X

  • Hi I've recently been told the same that its all in my head after 12 years of pain diagnosed with endo and operations to remove it but I'm still suffering in a lot of pain had scan and told there's nothing there its all in your head my Dr gave me morphine for the pain. ( morphine for mental problems???) Doesn't make sense I know but that's my Dr for you totally useless he's a man and hasn't got a clue in the slightest what the pain we go through is like. Like what kaiyya said we are here for you if you want to chat or have a rant we have all been through it or similar we know how you feel. Take care xx

  • Thank you for your kind words it means a lot to me.

    It is difficult, I just wish that male GPs were educated more on endometriosis and how much it can turn your life upside down. They don't seem to understand.

    Morphine that's stirs. You'd imagine it would be an antidepressant if it was all in your head. Did the Morphine help though? My doctor has put me on some neurological drugs as he thought it was to do with head. I'm still on them but my dose is a lot higher than it initially was. He won't put me on any pain relief.

    X x x

  • I expected anti depressants with him saying Its all in my head. The morphine doesn't get rid of the pain it eases it and knocks me out so I'm too out of it to care to be honest. I suggest you ask for a second opinion for pain relief I can say its not in your head but can't say what pain killers to take sorry. Xxx

  • Bladder pain is excruciating, it's what drove me to finally get diagnosed, and can be referred abdominally.

    Given the clinical evidence already your GP should be utterly ashamed of themselves, it's exactly that sexist, dismissive attitude that is behind the shockingly long average diagnosis time.

    I would make a formal complaint and change to a better educated doctor

  • It really is. It's hard to explain to people how bad it can actually be.

    I changed GPs after seeing the doctor in question but if my new doctors doesn't start taking it seriously ill be putting in a complaint against him. I've had to do one previously and really kicked off about it. It just gets frustrating. I'll definitely save that link though.

    X x x

  • I'm so sorry for the struggle that you're going through. There's nothing worse than one doctor telling you one thing and then another completely counteracting that and making you feel like a muppet. When I was getting diagnosed with endo, I spent about 5 months being tested for different STIs because the doctors were convinced that my symptoms were because of that instead of edno! It was humiliating and degrading but I knew that wasn't my problem so I kept fighting and booking appointments with different people until someone finally took me seriously and didn't dismiss me because of my age and student status. Stay strong and keep fighting!! Xx

  • hi! I was diagnosed in january and had surgery to remove the endo. I suspect its on my bowels, because im still suffering the same pain that i had before the surgery. The doctors told me that surgery on my bowls would be too risky, and so i have to deal with the pain by only having a period once every 4 months. I have to take time off work for the pain, its ridiculous.

    Unfortunately a lot of us just have to remain in pain silently until the government and society take women's pain seriously

  • Same thing happened with me. They were willing to go ahead with the surgery but I declined. I know someone in a similar situation who now has to wear a permanent catheter

  • This is a good article to take to your GP it's about the new nice guidelines and basically tells doctor's to listen to their patients recounting pain and not tell them it's in their heads.

  • Sorry to hear your struggling. I know only to well how difficult the fight to get treatment is. It is best to educate yourself and be your own advacate. I have found the best source has been to read the files on Nancy Nooks page on Facebook. I have had a fight to get a referral to an Endo excision specialist on the NHS but after an unsatisfactory Lap locally i have had to push. I have stage 4 endo and adenomyosis. I hope this helps, good luck.

  • Good morning lovelies,

    I'm feeling much more positive about things today. 😊 I had a doctors appointment earlier this week. The doctor I saw was a new one and he was amazing. He's worked previously with my gynecologist and could relate to my pains and frustration. He actually took my matter seriously and was astonished that the doctors hadn't prescribed any proper pain relief. He's put me on tramadol for a short term while I wait to hear from urology. The tramadol is really helping with things and I could even have a run around with my dog the other day!

    He explained what medication I needed and said be will prescribe once I've had my urology appointment next week.

    As to say I will be requesting to see only him going forward.

    X x x

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