I'm new here. If anyone can relate to my story/ symptoms or medications i would love to hear from you.

[Strona6]

Hi,

I have just joined this evening. I have recently been diagnosed with vulvodynia. I commenced amitryptyline 10mg 2 months ago. The consultant changed it to nortryptyline last week for unprovoked episodes of vulvodynia. Having researched both drugs, it appears they do much of a muchness.

I had an episode during the week which the room was absolutely spinning. I didn't want to change the meditation at the same time. I was also hypertensive, and diagnosed with vertigo. I also have fibromyalgia, it was diagnosed due to lack of sleep over a 3 and a half year period in close succession, breastfeeding my 2 children. They woke hourly due to reflux & colic issues.

I have had 2 emergency cesarean sections. My last one 6 years ago was very traumatic. After delivery my uterus wouldn't contract & i was haemorrhaging. My partner watched as both surgeons had to manually hold down my bowel until the consultant arrived. I was then given a general anaesthetic, and my life was saved. It was very traumatic, however i believe i have worked through it all.

I had paina deep inside the vagina a brief period after that. Then after intercourse, 2 years ago i seemed to get a burning, throbbing sensation after intercourse & when my period was due.

However it has been constant and passing urine is very painful. The consultant has out it down to the trauma. However i do recognise the link between the brain & body. I believe it is a result of nerve damage, or linked to fibromyalgia. Sorry for the long story, i just wondered if anyone can relate to this. Also could anyone tell me if amitryptyline worked better or nortryptyline? I feel my eyes are constantly blurred and i don't like it. Or will it settle, i felt fatigued in the morning with amitryptyline. I no nortryptyline is meant to be a cleaner drug but I'm just not sure.

I am waiting on gynaecology ohysiotherapy also. Has this helped anyone?

Best Wishes to anyone living with chronic pain. I feel grateful everyday it's not terminal. However it changes your whole life and your loved ones. Xxxx

[Chocolatemom]

Hi, I have very different issues than you pain wise, and I live in the U.S but have you started Physio yet? If you have see if the person can teach you Diaphramatic ( very deep) breathing for you to practice 5 mins a day a few times a day while lying on your back. I know it sounds like utter hogwash, but once you get the hang of it, breathing deeply into your abdomen thiscway will help you relax those pelvic floorvmuscles and do a world of good for your mental health while you're searching for other answers.

If sitting for long periods is an issue for you, get a simple " donut shaped" pillow that you can take literally everywhere you go- even driving. I got mine at the pharmacy and they can be ordered on-line for about $20.00. When you're not in a flare they can take away a good 50-60% of your pain. Also electric heating pads and microwaveable pads filled with corn/beans are a must.

I don't know about the amitriptyline- I couldn't take it and some other medications like it because it interacted with my antidepressant. But you should know there are a world of medications out there. Not only are there Gabapentine, and Lyrica to takr orally but some doctors will prescribe muscle relaxants to insert vaginally, like Baclofen or Valium. Worst case scenario- sime doctors will prescribe narcotics- but we all know the fuss over those medications nowadays.

I hope this information helps. You probably know a lot of it anyway. I admit it can be scary and overwhelming. Hang on, you're going to make it.

[Strona6 in reply to Chocolatemom]

Hi Chocolatemum,

Love the name! 🤣Thanks so much for that. I will try the deep breathing. I understand with pain, we must tense everything up. So anything is worth a try. I previously tried gabapentin, then pregablin. I never took high doses. The most i took of gabapentin was 300mg 3x day. I am so sensitive with alot of medications, i didn't feel it helped my neuropathic pain at all.

I am goibg to persevere with the nortryptyline for a few weeks and monitor the effect of it & side effects.

Thanks for the encouraging message. I must admit since i did start amitryptyline now nortriptyline the pain does appear to have improved. However i am in the menopause now & I'm sure the vulvodynia etc. All depends on the hormone fluctuations. Oh to be a woman! I have tried hot & cool pads & was prescribed instillagel. I also have 5% lidocaine gel fpr prior to intercourse, however i haven't tried that yet. Thanks again for your support & kind words. I hope this finds you having a good day too.xx

[Konagirl60]

I’ve used Nortriptyline for ten years. Lyrica, Gabapentin, Cymbalta and Tramadol did nothing for my nerve pain. I had terrible side effects and reported them to the highest health jurisdiction in my country.

I take 40 mg. in the am, 40mg. in the afternoon and 60mg. at bedtime. I had a pinched rectal nerve that was stuck between ligaments in my right buttock ( ischial spine ) and it was decompressed with surgery after 3.5 years of living hell.

The only issue for me is fatigue.

Deep breathing does help as does meditation.