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Pelvic Pain Support Network
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19 years old,Chronic pelvic/vaginal pain, losing hope

I'm in a bad state mentally right now so I'm sorry if I'm not explaining myself well. 3 years ago, when I was 16 years old, I had a vaginal cyst that I went to the ER for and they didn't know what kind of cyst it was but they cut into it anyway and put a catheter in and sent me on my way. They said it might have been a bartholin cyst but they weren't sure, it didnt look like a bartholin cyst to me. I ended up developing chronic vaginal pain after this procedure, also called vulvodynia, and then a few months after getting diagnosed with vulvodynia I was diagnosed with high tone pelvic floor dysfunction. I went to physical therapy for it for a few months and it made zero difference to my pain. I'm now having constant twitching/muscle spasms around my vaginal entrance down to my rectum, it feels like when you have an eye twitch. I can't get in to see my gynecologist for 2 more months (I've already been waiting 3 months) and I just don't know what to do anymore. The doctor im seeing is a specialist but i feel like nothing is being done to help me and it takes months to get an appointment. I'm 19 and I've never been in a relationship or intimate with anyone because of my pain both emotionally and physically from this whole ordeal. It gets worse every year and now I'm dealing with constant twitching and spasms and I have no help from anyone or answers as to why. It's just going to keep getting worse. I just feel so defeated and no one in my life understands. All I can do is cry alone in my room in pain and lose sleep over it. I dont even know why im posting this I just don't know what else to do

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Sorry you are suffering:( sounds terrible and you are so young. Are you on any medication? There are meds you can take and I think a great pelvic physio could make you better, but it’s gotta be a special physio that knows pelvis very well and all the pelvic conditions, amitriptyline and gabapentin would help for V pain

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I’m so sorry you’re still suffering young lady. If possible you should arrange to see a specialist pelvic floor physiotherapist who’s had experience of this disorder. I can completely relate to your mental state because I am feeling the same. I hope you have support from family. Check with your doctor about nerve pain meds. Also do a search on this forum for magnesium. Hopefully Matt_Lockhart’s post will pop up. He recovered by taking magnesium glycinate. A very rare outcome but one which is worth exploring since you’re having muscle spasms. Again, check with your doctor first. Hang on to the fact you haven’t had extensive and invasive female pelvic surgery like many of the women on here so there’s a chance you may see improvement in time with the right practitioners in place. The waiting times in the UK are just as bad! I wish you every luck. Try to stay strong (believe me I know how hard that is) and keep us updated. We’re here for you x

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Great advice! 🌟

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Thank you for the kind reassuring words, I really appreciate it. I am starting counselling in about 2 weeks to hopefully help me deal with everything mentally and emotionally. I have tried magnesium glycinate in the past but I am going to look into it more and try it again to see if it will help with the spasms. In the meantime I'm waiting for my appointment with the pelvic specialist again to see what to do next. Thank you again

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Just another thought Anne. Could you try counselling? It’s not for everyone but it may help. You’re right, no one understands this pain. I’m afraid we’re on our own in this respect. But please try to avoid being physically on your own if possible, endlessly Googling. Have a good cry to release emotions but force yourself to get up and carry on as best you can. I’m afraid there’s no quick fix but there’s hope and you must hang on to this. Take care x

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Please read "life after Pain by Jonathon Kuttnerabd Naomi Kuttner. It breaks my heart to read your post. You are so young and suffering so much.

I believe that your anxiety is linked to these spasms and twitching.

Pkease try and see a pelvic floor physio who can relax those tight muscles. I hope you feel relief very soon.

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I did see a pelvic floor physical therapist for maybe 6 months and we did internal therapy to help with the spasms but there was no improvement, the therapist said she could feel that it wasn't changing. I might try it again with another therapist depending on how my next appointment with my pelvic floor specialist goes. I'll look into that book though, thank you for the recommendation. :)

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Try another therapist. But also work on relaxing your mind. I've also had severe anxiety which resulted in me having pelvic pain and spasms. I had therapy to help release tight muscles but the main change that brought relief was deep breathing exercises to calm the mind. Your anxiety prines the nervous system which can get hypersensitised and cause tics, burning pains and spasms. Also once your system gets into this state it can take a lot of time to get back to normal. My advice would be to get yourself checked out for physical issues like tight muscles then start practicing meditation and mind calming techniques. Eventually the symptoms will calm down and finally go away. I would recommend you read Dr Weeks help for your nerves. She explains anxiety and all the symptoms it causes and also how worrying and panicking keep making the symptoms worse. Please believe me when I say that I've been there and it does get better and go away. I hope that helps.

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Good advice. I suffer with severe anxiety because of the pain and try to relax as much as possible. Difficult I know. I’ve been getting eye tics too. I thought I was the only person experiencing this! It’s stress and panic which in turn fuels hypersensitivity. Sometimes when I take a couple of paracetamol, lie on the sofa and deep breathe with my husband massaging my feet (he’s lovely bless him!), I end up dozing and the pain reduces significantly. It’s a little miracle, well for a couple of hours.

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Oh Anneanneanne - chucking loads of virtual hugs in your direction.

Totally understand where you are. I’ve had this for about 18 months and have recently been to a succession of specialists all of whom try and fit my symptoms into their field of knowledge and come up with nothing realistic that will help. I’m lucky in finding a specialist pelvic physio in my area ( I’m in the UK) who totally gets my symptoms. She explained and showed me on a model of the pelvis exactly how the pudendal nerve can be compressed and has given me exercises to help release my very tight pelvic muscles. Alongside this she is also experienced in both external and internal massage techniques. By no means is my problem resolved yet but I am met with sympathy and understanding rather than derision (a GP I went to) and that in itself is a mental help if nothing else.

One thing she did tell me which does help (appreciate this isn’t going to work for everyone) is when the pain really cramps up is not to tense up the muscles in reaction to this which is a normal reaction to pain. This tension makes the pelvic muscles tighten even more creating further pain. I find that deep breathing and concentrating on that rather than my pain really helps me.

A bit of advice - you are very young and as you said have not been intimate with anyone so the thought of internal pelvic massage must be a) embarrassing and b) perhaps rather scary. If it’s something that might help you then please don’t be embarrassed talking to your physio amd explaining your situation and how you feel. It’s something they do all day and as far as they are concerned it’s no more difficult to talk about than gardening.

I also second Ruby_16’s advice about seeing a counsellor. This doesn’t mean that what you are experiencing is in your mind at all. It does mean that maybe your mind can help with finding a way of coping with the physical pain. I do hope you can find some immediate and sympathetic help and don’t despair please. This is horrible, debilating and scary but there are things that can help, it’s just a case of finding what works for you.

A huge hug and let us know how you’re doing please.

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Goodness no, I should have clarified this point in my post that the pain is absolutely not in your mind. I see a trauma counsellor because I am in a very bad place. I pour my heart out and sob a lot.

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Just want to say thank you for responding. I need all the virtual hugs I can get lol. I'm definitely taking into account eveyones advice and knowledge. I'm wishing you well.

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Here’s a virtual hug 🤗 xx

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So sorry that your having so much pain....I would try to see a pelvic pain speciltz

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Hey I’m 19 and I’m constant chronic pain also. My birthday was 2 days ago. My pain began a year ago. Although mine pain has been diagnosed as a chronic urinary infection the treatment process is very very long and I don’t know if it’ll ever get healed up. However, more recently I have been referred (after insisting) to a pain management Doctor and it’s been the most helpful thing thus far! I have been out on pregabalin which has allowed me to sleep. I’m still in pain but the dose has to be slowly increased so I’m filled with hope that it will continue to improve. I am so so so sorry to hear that you are going through this. Trust me when I say I know exactly how you feel, I know that no one seems to understand and I get how exhausting it is pretending to be fine. You can get through this- I promise you xxxx

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Another young lady 😔 But you’re so positive and you have every right to be. I’m humbled.

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Thank you, I'm trying to keep my spirits up. It's rough being in pain when you are so young and everyone around you expects you to just be a normal young adult/teenager, I know you understand. Best of luck to you and thank you for the support!

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So young and suffering. I have had similar issues to you. Damaged peripheral nerves which caused stress that led onto pelvic floor dysfunction. Eight years on nerves mended pelvic floor still in dysfunction and unbelievably painful. Leads to more stress and more pain. Please look into it. I have been told by a specialist in America that pdf is so often misdiagnosed. Hope it helps.

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I totally know how you feel. Non stop pain is exhausting mentally, emotionally and physically.

Other than magnesium 100mg/ 3X a day, you might like to try Pascoflair. It’s made in Germany and is made from passionflowers. It is a GREAT anti- anxiety, anti-restlessness and it helps us sleep. I swear by it and I’ve had neuralgia for ten years.

Have you been offered a trial of Compounded vaginal suppositories containing 20%Valium/ 2%Lidocaine for bedtime, I couldn’t sleep without them.

Where do you live? Sending a big virtual hug.

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Hi thanks for the recommendations I will definitely look into them and bring up the suppositories to my doctor. I have lidocaine that I use occasionally for my vulvodynia. I live in the US in California. Sending a virtual hug back to you.

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So so sorry! First of all, any cyst or polyp is supposed to be biopsied, so you need to request your records. Do you have access to a urogynecologist? Some of them do Botox in the pelvic floor. That saved my life! I also have a great pain mgt. doctor. Best wishes to you, dear.

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