Vulvodynia Severe Pain: Hi Everybody... - Pelvic Pain Suppo...

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Vulvodynia Severe Pain

beautifulinside profile image
beautifulinside

Hi Everybody,

I'm 27 year old single parent and have only recently been diagnosed with vulvodynia.

I contracted a ureaplasma vaginal infection in January, I have since tested negative for the infection but have been left in an awful amount of pain. I went to see a specialist that deals with vulva pain and we think I now have damaged nerves from the infection, which are continuing to give me a burning sensation. I also get a tingly, pins and needle sensation too at times. The burning pain can be anywhere from a 4/10 to a 10/10. Today, and for the last week it has been a 10/10 every day, I think I am having a flare due to taking the morning after pill and my period starting.

I have been prescribed Noritrypltaline, which I have been told to increase the dosage every week. I'm on 20mg atm and feel no different, if anything I feel worse pain wise but that could just be a coincidence.

I'm at a complete loss, i feel depressed, anxious and suicidal. I'm not sure how much longer I can put up with this level of pain. I have a 2 year old and I can barely function throughout the day looking after her.

Please help me.

20 Replies

Hi there, firstly if you are feeling suicidal please go back to your doctor ASAP and tell them this. Secondly, you are not alone in how you feel, I have two children, one 3 months old and I have had this for last couple of years and is currently worse after having second baby. Sometimes unbearable when sitting or walking. Other days completely manageable?!. Covid put a halt on some pelvic floor treatment I was having, but I’m hopeful I can resolve this one day. It’s not right that people are just left to deal with this and fobbed off. Sending love x

Thank you so much for replying to me!It makes me so sad that other people are also dealing with this type of pain, its physically and emotionally exhausting.

My GP has not been very helpful or sympathetic to my issue. I was told on numerous occasions that I must have thrush (before I went to the specialist). They don't seem to understand the pain or vulva pain at all, and tbh I feel uncomfortable talking to them about it as they make me feel as though I'm going mad and it's all in my head ):

I honestly couldn’t agree more, and I had the whole thrush thing, along side STDs! They ask every time if they can check me for stds and it absolutely infuriates me as I have been with hubby for 17 years and we have two children. There needs to be something done about how they deal with womens issues like this. I’m so sorry you are feeling so down about it. Do reach out to me if you need someone to talk to x

Hi . I’m so sorry to hear your story. Please speak to someone. Tell your gp of your pain issues surely they can get you more help.

I’m sorry to hear about your pain and diagnosis. I too have symptoms similar to yours with the addition of feeling like I need to urinate more often than I should. I have had these symptoms for nearly 2 years.

I agree that if you feel suicidal then you should speak to your GP. Feeling anxious and depressed is exactly how I felt when it first started.

I have found a combination of prescription drugs and CBD gels has helped me to sleep at night (I don’t think they help much during the day if I’m honest). Once I have had a better nights sleep that usually gives me a better day.

I have been having womens health physiotherapy which has definitely helped. Last year I wasn’t able to see my physio for 6-7 months which wasn’t great but I have been seeing her again since September. Do get yourself referred if there is someone local to you. If nobody is available on the NHS, I would definitely recommend you pay to see someone, it can be expensive but worth it. Look up Maeve Whelan on the internet

pelvicphysiotherapy.com

She has an exercise called sniff, flop drop, which is useful to help release the muscles that are tight around the nerves so it may help you. It is something you have to daily if you can. She also has a list of pelvic physios so you can see if there is one near to you.

Unfortunately there is no quick fix but there is help out there. My physio is my rock, someone who actually understands what I’m talking about.

Best wishes for your recovery.

Thank you for replying to me!I really appreciate hearing the treatments tried and tested etc.

I've actually booked in to see a womens health physio on the 17th may, she does not live close to me but I figured it's worth going to see her as I am so desperate lol. I'm paying privately to see her as I was told by my GP that the NHS waiting list for that is 6 months long. I despair.

Definitely get yourself referred for NHS treatment as as well, you shouldn’t have to fund this all yourself. Initially I saw my physio every 2 weeks, this could end up be very costly otherwise. Do try Pregabalin (lyrica) and amitriptyline they do help with sleep but like others have commmented, they can make you fuzzy during the day. I’m a nurse so I can’t have that. I’m sure your physio will help, it’s so good to have another person understand what you’re going through.

Xxx

As well as seeing a pelvic floor physio I have found these things helpful to me

Wearing only 100% cotton pants

Washing underwear in fragrance free detergent... I use ecova zero

My gp prescribed Dermol wash to use in the shower as shower gels shampoos etc can irate. So what he told me to do was put the dermol all over the vulva before starting to shower and then rinse of at the end.

The other thing I found helpful was using Dr. Wolff's Vagisan Moisturising Cream when things felt painful or dry.

I think these smaller things helped to keep on tip of my symptoms but the most helpful thing for me was the pelvic floor physio. I had treatment both on NHS and privately and i would highly recommend.

Please see your gp and explain your symptoms and how they are making you feel as they may be able to give you other medication or do a referral for you

Please don’t feel like your alone, this is a friendly fourm and please share and ask questions.

I have pelvic pain issues also and prescribed amitryptiline, 50mg in the morning and 75mg at night.It took me a good few months to get the dosage that worked for me. Smaller dose during the day helps to relieve pain but doesn't make me fuzzy headed. Larger dose at night helps me with sleep.

Please consult your doctor about how you feel. I'm sure many of us would agree that pelvic pain can become all consuming and finding the right treatment is an uphill battle.

Really hope you find what's best treatment for you, stay strong we all know how you feel, you are not alone!!!

Hi! Would like to ask how did you get treated for the ureaplasma? Can you please tell me the antibiotics/dosage and for how long did you take it? Do you have itching as well? I have itching, every test negative which is available at NHS.

Hiya, I had to go for a private STI screening which cost me about 250 quid. It was well worth it as the NHS screenings only test for 3 different STIs max. The private screening also prescribed the antibiotics to treat the ureaplasma. In total I spent about 3 weeks on antibiotics. I was on doxycycline for 2 weeks and then azithromycin for 1 week afterwards. It was a long, brutal treatment tbh as the antibiotics really messed me up!

Sorry I forgot to add that I can't remember exactly the dosage I had, but it was what was recommended by the clinic and by numerous other online sources etc

Hiya, thank you so much for your reply. May I ask you what was your exact symptoms before the antibiotics? Did you have "only" the burning sensation? Or did you have any kind of itching?

Of course, I'm happy to help if I can do! So before I found out I had ureplasma, I had an intense itching/burning sensation along with pain when urinating and green/yellow discharge. I also had an itchy anus too.

Because of the itching I thought I had thrush as did many GPs that I saw.

From what I remember, once I started the antibiotics the itching subsided after a while and I was just left with a burning sensation, as if somebody had set my vagina on fire.

Hello, I am so sorry to hear you are having so much pain . I was prescribed amitriptyline and lyrica at the same time,which took the pain away.I learnt a lot from the vulval pain society,if you go on their website. I hope you can get some help soon X

lucikam profile image
lucikam in reply to SammyCrowley

Hi! Do you still take amitriptyline and lyrica?

SammyCrowley profile image
SammyCrowley in reply to lucikam

Hello, I have been on 75mg of amitriptyline for 16 years and for the first time since then I have just started on Lyrica again this week. I have been absolutely fine on amitriptyline,but I've had pain since October brought on I believe by stress . Sammy.

lucikam profile image
lucikam in reply to SammyCrowley

Hi Sammy, thank you! How long have you been on lyrica back then? Do you have itching?

SammyCrowley profile image
SammyCrowley in reply to lucikam

I only started it this week on a low dose of 100, it may take a while for any effect. I have a lot of pain, pudendal neuralgia.

Hi BeutifulinsideI totally understand your pain.

I am in the same situation for 5 years.

Gynecologist only been able to diagnose me with vulvodynia on Jan 2021.

Went privately for physiotherapy since Jan, i am on amitriptyline 20 mg. I am using Dermol ointment instead of shower gel.

Doing breathing exercises- which did help with the pain. Have purchased viginal dilators because could not get anything inside.Even stopped having sex since Dec. If you are thinking to buy vaginal dilators start with small size working your way up. It’s awful, my husband said I don’t want to touch you anymore due to the pain afterwards. Frequently using the toilet, having burning sensation every time i was urinating. Have read everything that I could find on Google. Now would like to do some research about Vaginal Botox injections - apparently helps the muscles to relax.

Been told there isn’t a proper treatment, just try various options and see how your body reacts.

This is going to take time until you will notice improvements.

Hope you will feel better after reading this.

You are not alone.

If this helps, you can share your progress .

Take care.

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