Terrible pain

[GingersMom]

Hello, I am new here. In short, I have been to the doctor several times in the past for vaginal pain and burning and even rectal pain. The only thing I’ve ever been diagnosed with is a yeast infection and bacterial vaginosis. I get cramps and stomach aches regularly, but the past few days have been different and terrible. I have pelvic pain more on the left side that seems to wrap around to my back. Even my legs hurt. Due to the Covid 19 Virus, I was only able to have a phone appointment and was prescribed pain meds. For reference, I am almost 38 years old and I have a nine year old and I had a miscarriage four years ago. Any ideas on what this could be?

[kalecolbe12]

You may have pudental neuralgia and/or pelvic floor dysfunction.... This is where the nerves are irritated and the muscles are spasming because of it or vice versa... You should read Prudential hope.com or go on pudental support Facebook site and you will see a lot more people have these similar symptoms and usually people need to do pelvic floor physical therapy and perhaps get some medicine that calms the nerves and muscles down instead of just pain pills which don't really work that well... Best place to start is with a pelvic floor physical therapist and get assessed for muscle tightness weakness nerve pain and go from there because she will convey to your doctor what she finds and then you will be given appropriate medication

[GingersMom in reply to kalecolbe12]

Thank you for responding. That gives me hope.

[Hidden]

I agree, you certainly have pelvic floor dysfunction. Much of my pain caused by muscles going into spasm trapping nerves etc.

Specialist pelvic physio is needed.

Mine was misdiagnosed for years as infection but now it's affected back end there is no doubt what it is.

Diazepam has helped with severe spasms as normal meds such as pregamblin and Gabapebtin cause bad reaction

Stay strong.

Love Korin in the UK xxx

[GingersMom in reply to Hidden]

Thank you for responding. I am in this weird space where I have to decide if it is worth it to venture out to the doctor when I really don’t want to. I think I will try to wait it out until it’s safer to leave the house.

[Hidden in reply to GingersMom]

I think that's very wise.

Stay safe.

[kalecolbe12 in reply to Hidden]

Hi Korin.. we have spoken several times and I just wanted to get updated so you have a bad reaction with the gabapentin? can you tell me what reaction you have with those meds ?so maybe I'll ask for some Valium well I have gabapentin but I haven't tried it yet

[GingersMom in reply to kalecolbe12]

Hi. I just thought I would share my experience with Gabapentin. I was prescribed it years ago for twitching that was keeping me awake at night. It made me very sleepy and I almost feel a little drunk if I take it during the day. My husband’s grandma was given it for back pain. It had negative psychological effects on her. That’s all I can share about it. I’m fine with it as long as I take it before bedtime.

[Konagirl60 in reply to GingersMom]

Gabapentin is a toxic drug. I couldn’t tolerate it.

[Hidden in reply to kalecolbe12]

Hello

Gabapebtin made me hallucinate badly even at very low dose. Pregamblin and Baclofen made face swell and had feeling head chopped in half, again low dose.

Diazepam seems to have effect for 48 hours of relaxing muscles and reducing spasms so helping pain. The medics are not keen on prescribing it here.

How are you getting on in this awful situation?

Korin x

[kalecolbe12 in reply to Hidden]

Not great here.. I've had a really bad flare-up the last few days.....I had a nice routine that kept me going where I would pop into my local trader Joe's they give samples and coffee for free and I would see everybody in there and I love that but they stop that now Then I would go to my other store but they closed like it's just really cuts into your survival routine and it makes you even more depressed.... Although we can go out and do some shopping which keeps you going my sister said that it was very difficult for anyone to go out in the UK cuz they shut everything completely down and made everyone homebound except for essential workers and that sounds horrible ..I couldn't decide if this coronavirus is overblown or if it's really as serious as they say...I still have the gabapentin to try but I have been afraid to try it as my cyclobenzaprine works very well but that's a muscle relaxer and it actually is an antidepressant too however I try not to take it everyday....by the way everything I'm reading about cymbalta seems to be working for a lot of people for our condition...I may ask to try that...what do you think?

[Hidden in reply to kalecolbe12]

Hello lovely

Sorry to hear about flare up. I think the stress of the situation isn't helping. Makes everyone anxious and pain gets worse as a result.

I'm here with my husband and little difficult dog on our cosy bungalow. Have an online physio appointment on Wednesday. I had an osteopath who was really helping but she has closed for at least a month. It's pretty crazy stuff here but I agree with the lockdown. They are trying to keep us all safe. Dreadful situation in Italy and Spain. The suffering is the worst thing.

I think with the meds you go with whatever is helping or you feel might help. We all need to take one day at a time and help one another in whatever way we can.

Almost one week in to the lockdown and I have to say the change in the pace of life is actually good. Life always so frantic before even though we are on outskirts of a smallish town.

Is there anything you can do like ice pack or hot water bottles for flare up?

Please keep in touch. We will get through this.

Love Korin x

[kalecolbe12 in reply to Hidden]

Yes I agree but there's a lot of good coming out of it as far as people reconnecting..

It sounds nice being in the cozy cottage with your husband and your dog can you tell me what town you're in just so I can get some coordinates since I'm from the UK.. I got a hold of my pain I took my muscle relaxer and ibuprofen and it's calm down somewhat now I just keep taking my meds but I was off them for 2 weeks 2 weeks ago I had no meds for 2 weeks it was fantastic but it just flares up again with stress...not so much worried about the coronavirus ... worried about losing all my business not having enough income...ah well

[Hidden in reply to kalecolbe12]

We are in Southport. North West coast.

Worst thing is fear of having no food! I get anxious about it as my poor bowel needs to stay regular or the pain goes through the roof.

I think you've done really well to manage without meds for 2 weeks. Excellent. You will get back there. Clever lady.

You certainly help me.

Thank you.

Please try not to worry about your business. It will all work out.

Love Korin x

[kalecolbe12 in reply to Hidden]

Thanks korin and I'm trying not to stress but I've had a terrible pain flare yesterday and today I want to get the pain under control...but just throwing all my loaded guns at it cyclobenzaprine gabapentin ibuprofen.... I've actually went on a new Facebook site you might want to go on called pelvic floor dysfunction support and the other one I went on with pelvic floor dysfunction rectal and then there's pelvic floor dysfunction for women... One of the women on their got a colon reroute so she doesn't have to have pain with bowel movements so now she's gotten an iliostomy bag after 5 years of having horrible pain with bowel movements she said she doesn't regret doing it no more pain

[Hidden in reply to kalecolbe12]

Thank you.

Yep, my pain too ridiculous in night. Just spoken to GP and now got amitriptyline. I really hope your pain meds work.

Haven't done Facebook but maybe should have a look.

Got online physio appointment tomorrow.

Thinking of you my lovely friend xxx

[Konagirl60 in reply to Hidden]

If Amitriptyline doesn’t help you or causes bad side effects, you might try Nortriptyline. Both can cause dry mouth so do keep hydrated by drinking water.

What dose of Amitriptyline did they start you on?

[Hidden in reply to Konagirl60]

Thank you for that.

I will ask the doctor.

I was only on 10mg.

Very best wishes to you.

Korin x

[Konagirl60 in reply to Hidden]

If it’s severe nerve pain you’ll need a stronger dose and likely three times a day. Keep us posted.

[Hidden in reply to Konagirl60]

Will do

Thank you.

Are you taking muscle relaxant as well?

Korin x

[Konagirl60 in reply to Hidden]

I couldn’t tolerate muscle relaxants when this all started.

Now that I’ve had the three surgeries I needed I use magnesium bisglycinate for muscle spasms along with Epsom salt baths.

If I have a flare I use Buscopan. Have you heard of that one?

[Hidden in reply to Konagirl60]

Yes we can buy that here. Interesting. Thank you.

You are so brave to keep fighting on through all the surgery.

Love Korin x

[Hidden in reply to kalecolbe12]

Have you ever read A Headache in the pelvis,? Some interesting stuff on trigger points that are often missed.

Xxx

[Princesspeach84]

I have vaginal and rectum pain. I also have back pain and pelvic pain. I have endometriosis do you think that might be what you have too? x

[kalecolbe12 in reply to Princesspeach84]

I was wondering what you're taking for your pain and what has worked for you? I so far I only have the rectal pain but it's so much pain and pressure only muscle relaxers help it and I'm going to try some gabapentin and maybe some Valium...I was doing okay and then is coronavirus crisis came and I started stressing out about losing money and everything and the pain came back so it's definitely related to stress also

[Princesspeach84 in reply to kalecolbe12]

At the moment I don’t take any pain medication because I have not long had my operation (Nov) for endometriosis removal. The pain was like I was sat on painful swelling. Before my op I was given prostap injections which shrink endo and that helped. But since having the endometriosis in that location I do tighten my muscles a lot and I think I have pelvic floor dysfunction because of stress. I have a lot of hot baths for this to try to relax more x

[kalecolbe12 in reply to Princesspeach84]

Yeah get that tightness under control because it may progress to full pelvic floor dysfunction and pudental neuralgia which the pain is very debilitating and you have to take meds for that

[Princesspeach84 in reply to kalecolbe12]

I definitely will, thank you 😊 x

[Hidden in reply to Princesspeach84]

There's a good relaxation pelvic floor video on YouTube - pelvic fusion - the one with the flower.

You definitely need to stop tightening the pelvic floor as other lady says. Relax, relax, relax....

[Princesspeach84 in reply to Hidden]

Thank you I will check this out 😊 x

[Hidden in reply to Princesspeach84]

And maybe get yourself a Pelvic physio. Best to get help now.

Just try googling it. You might find someone in your area. Are you in UK?

[Princesspeach84 in reply to Hidden]

Yes I am. I will google this and research for a specialist, thank you x

[Hidden in reply to Princesspeach84]

Great.

I think there are two main schools of training - one via Jilly Bond in Cardiff the other with Maeve Wheelan in Dublin. Both are leading experts who run courses for physios.

Good luck to you. Hoping it goes well and you get good recovery x

[Princesspeach84 in reply to Hidden]

Thank you x

[GingersMom in reply to Princesspeach84]

Yes, that on my short list of possibilities.

[GingersMom in reply to Princesspeach84]

Does Endo pain only happen around the time of your period? Or all the time?

[Princesspeach84 in reply to GingersMom]

It used to be just after my period that I had worse pain, but as time went on the pain was everyday. The only way to diagnose endo is via a lap (although they knew I had as mine as it came to surface and was biopsied a few years ago) when I was at my worst, everything was swollen and painful. I was put on Prostap which helped, but when I was due my jab I had muscle spasms in rectum, I struggled to relax and after op it’s not as bad but not 100%. Hope you get sorted x

[Merc7582]

PN I would say, all my symptoms as well more on left side for me. Go days without it then boom it’s back, tried all medications, I just try to switch off from it now which has helped. I have had scans so I know it’s nothing sinister. So I try not to worry about it.

[starblue]

I'm sorry to hear of your pain. Have you ever tried magnesium? Here is an article about it: bodyunburdened.com/magnesiu...

[GingersMom in reply to starblue]

Thanks for the info.