I can't tell you what happened to me 2 years ago. But it lasted physically for 3 months. I finally escaped and I've been free for a year and a bit. It's left me scarred and damaged internally. The Dr's have given me 3 exams and 3 sti kits. And said I don't have anything, and they don't know why I am so red, inflamed and the pain is all in my head. And they are ignoring the blood and the smell and redness and inflammation. I've being seeing a therapist for over a year. She says they can't ignore the blood in the picture I took but they are. She says my symptoms don't match vaginismus. She has kept me on her books as long as she can and now the funding is cut. I won't see her again from the start of January. The Dr's and nurses are threatening to take me off my hormone meds 'to see what happens' in January as well. I feel like my pain and bleeding are being not just ignored. But I'm being herded to the edge of a cliff in the hopes I will jump off myself. I've had a letter from my specialist telling them to increase my meds which is the opposite of what they intend. My question is how do I stop myself from jumping off the cliff they are trying to push me off?
Stuck: I can't tell you what happened to me... - Endometriosis UK
Stuck
Please don’t do that 🤍🤍 I understand what it feels like to feel desperate and not know what to do, and to feel like people aren’t listening and don’t understand. I’m so sorry for what you’re going through. I think you need to find a doctor who can help you. Is there someone on here who lives where you do who can recommend someone to you? You are not alone. There is always a solution, just sometimes it’s very hard to find. Hang on. It will get better. I’m praying for you 🤍🤍
The elders made sure I don't feel worthy of God's help but thank you. The admins on here made it plain we can't share Dr's names so saying where I am isn't going to help. I'm totally dependant on the January outcome. If they keep me on my depo I can still work and save up for a private gynae. About an hour away. I need help with the thing I don't know what is causing pain and I need a status update for endo and a proper indepth discussion about my options. My bowel and bladder symptoms have got worse this last year. I think it's not just covid related. I think it's the stress of what I was put through. Hugs.
Hi So sorry to hear this!! This is awful on so many levels. What do you suspect is the cause? Is there anything cyclical about your symptoms? I think sometimes we have to believe our own instincts. Go with your gut feeling and demand your GP refers you to the appropriate services. If one overlooks you go to another. Unfortunately these are the hoops you have to jump through unless you can afford to go private. Don’t let them grind you down. Sending love x
Thanks for replying. I see alot of people on here being told its all in their head. In all honesty I know I've got endo. Ive been treated that for nearly 20 years. But this new symptom could be anything. Aerobic vaginitis at its simplist. Desquamation vaginitus a bit more sad. Or an unhealed fissure from what happened. As above, I am totally dependant on the depo to stay working to pay for private care. So if they take me off it, I have to quit my job, give up my house and go back to my family. At which point my old Dr would put me back on the depo. As the pill didn't work, and neither did seyenna press for some reason. But my old Dr's weren't worried. They kept in touch with my specialist who said staying on depo was fine.
Hi It sounds like a complicated situation. I think you need to break it down. You can treat BV over the counter with canesbalance (canesten), so you don’t need a doc to try that. You need an endo review, that’s not asking very much. Did you have bowel involvement diagnosed as if you did you should get follow-up every 6 months. Just tell your GP you need an urgent referral. You could join a support group for survivors of trauma that might help you emotionally. I don’t really know what you’ve tried so its hard to know what to suggest. Just keep moving forward.
I don't have BV. Im using it because theres nothing on ghe market for Aerobic Vaginitis. It needs to be checked and balanced to each person. But I dont even have a diagnosis for it. I have been tested and had the slide looked at in the next room by the Dr. There's no sti. There's no BV. there's no thrush. As for the endo. I was put on the list for a laparoscopy by the specialist. And when I phoned over 6 months later I found out I'd been removed from the list and I wasn't even on the specialist list anymore. I think that's called being discharged? I did see her 1 more time a year later and she again stated I needed to have surgery for the endo. At which point I fell silent. I was speechless. Who took me off the list? I don't have access to a support group. I can't just 'join'. I can't find anything. I think it's such a specialised shameful thing emotionally it's excruciatingly private and my therapist said she would find me a victim support but didn't. I have a support group for child abuse survivors which I've posted in and I've helped lots of people with that. I had to remove myself from the endometriosis UK on Facebook because I was spiralling down seeing everybody's negative outcomes and cancer scares and their misery of stents, and catheters and failed surgeries and rude surgeons and doctors. And the number of people being forced to take the mirana coil and it causing pain as it made its own way out. I couldn't function. I wasn't using this group either but it sent me a survey to fill out. Which I did and it said I needed to post about mental health for support. I will be honest... it gave me the impression I was not posting in endometriosis help. It said mental health.
I have since made an effort to phone for an appointment in the city with a different family planning clinic which seemed to be going well until she made a flippant comment as an off side BTW the Dr will probably want to examine me. Come in prepared. I can't get in my own vagina. It took over an hour to do my last check. I was screaming growling at the Dr. The only way he could see was when I was bent double in agony. I walked out crippled with pain between my legs and right up my back and round my sides and internal agony. And there were over 10 patients waiting to get in, sat in the waiting room outside the door. It was humiliating. I needed a wall to lean on but there was no wall as I had to make way across the full room. I couldn't sit down for the pain. And worse of all, nothing was resolved. I'm not saying he was a bad doctor. I always find males to be much more sensitive. He wasn't enjoying it. He was doing his best offering music and breathing exercises and encouragement. But all that pain and nothing to show for it. I don't bother on here because 'it is what it is'. I give people my experience of the depo and stop. The depo is great. But the rest of what I'm going through is to do with the 3 months 2 years ago. And nobody cares. And nobody knows what to do. My body isn't healing. The yoga isn't helping. The talk therapy is ending. There's no surgery. No creams. I can't get the handle on pelvic floor exercises. I can't take non steroidal antiflammatories with gastrointestinal bleeding. Which is a right shame because the only thing that took the pain away in the vagina was ibuprofen. Which says to me its inflammation.
It's not so much the talk therapy ending I'm worried about now. I'm over the shock. It's the fear the guy will come back and attack me again and there's nothing I can do to stop him. He knows and I know he got away Scott free and he can do it again. And it bothers me that the Dr's can just stop my depo and leave me paralysed in debt and dependant on my families good will. For the sake of an injection being withheld my life has to stop and I'm a burden.
I'm going to stop now. It's already too long and miserable and I'm losing the will.
im so sorry! No one deserves to go through this. You can’t take NSAIDs what about steroids? They are the most anti inflammatory medication! I feel like it’s totally normal for you to feel overwhelmed and at a loss. I am just trying to say you have to take it one step at a time? When you put it all together like the above it is overwhelming. I am no expert so can only offer my limited insights. I feel that the best thing for you is to try to put bad doctor experiences out of your mind. First step find a gynecologist who has experience in sexual trauma. You might need surgery or hormonal creams to heal. Im sorry if my suggestions don’t help much its just the best i can offer. Keep strong and keep going. There is only upwards from here?? Right?? Xx
Hi there,Thanks for replying. Youve been really kind this last week. And thanks for the steroid suggestion. That has never once been mentioned. I don't know how steroids would be used? Can you tell me where to look? I've got an appointments on Wednesday and I'd like to be able to bring this up with her.
I've been given lidocaine by the pharmacist to help with the vaginal check at the clinic but it says external use only. Should I ignore that and put it in? Seems a bit odd to me. Doesn't seem fit for purpose lol.
I too wondered about eostrogen cream. But I wasn't sure if they'd let me have it. As I'm not menopausal. And have you any idea if it would affect my endometriosis? Last thing I need is another flare up. I can't afford to be off work right now. Since we last spoke I paid a huge car bill (I need the car for work) and got landed out the blue with a massive bill from an incompetent agent that is supposed to take care of my arrangements where I've moved from. They are supposed to make my life easier. That's what they are paid for. 😔
I'm sure everyone can relate when I say can we get some breathing space please?
I'll be phoning to find out if my Depo is being taken from me on the 15th of December.
And lastly there's a glimmer of help on the horizon if I do get to keep my job! The company I work for is paying for a vast array of counselling services! They were supposed to announce it in October but the company has had a massive restructure and its been left unmentioned until Friday when my manager showed it to me.
Again, thank you for your help. A friend is coming up to visit me tonight so that'll cheer me up.
The mental health side of endo, any advice?
Celiac disease or Endo?
Finally I have not cried after seeing a consultant!!!
Feel like I've hit rock bottom!
