Undiagnosed condition for 3 years (obturator nerve?)

[Chamois]

Good afternoon Violet,

Yes they used lidocaine as aneasthesic before to inject steroids in the adductor. I don't recall being specially spared from pain after that, anyhow the pain is so random with me that it happens that I have no pain during 12 hours straight (thanks god i still have some time to recover a bit). So it would be hard to pull any conclusion from this .

The next appointement i have with Bautrant is mid of May. He had told me to wait 4 months after the second injection. I have an appointement with his colleague Dr Bredeau mid of March, who is a pain doctor.

Let's see where it goes...

Today i came across a picture from last year where i went steep skiing, climbind solo, i was still thinking of getting an alpine guide degree back then. Now all of this seems so far away... I can't even drive 15' without being afraid!

[Violet M]

Hi Chamois,

What mountains do you climb in? Do you climb in the Alps? I have heard they are beautiful. I sort of understand the exhilaration you feel from climbing because I love to hike in the mountains near my home and I have a close family member who is a climber and was on a mountain rescue team. And I can understand how the nerves in your groin and pelvic area might possibly be stretched or injured during such strenuous exercise.

I wish you the best as you sort through this with your doctors. I would be interested to hear how it goes for you. My prayers are with you.

Violet

[April]

Hi Chamois,

So very sorry to hear about your continued pain. You mentioned that you are puzzled by the randomness of the pain. It is strange, but as Violet mentioned, that is common with pn. I am doing pretty well these days, but I still have flares, and many times I cannot link the flare to anything I've done. It is much more common at the end of the day (so time of day is a factor), but other than that, it's often inexplicable. These days my flares last a couple of days and can be managed with a heating pad. I use vinyl heating pads (so I can wash them) on high, and when I use it, I wear biking shorts with the pelvic floor area cut out. That way only my pelvic floor area gets the direct heat. I also used ice for many years. Have you tried heat or ice yet?

Take care,
April

[Chamois]

Thank you for your messages April and Violet, this is very kind.
It helps to exchange as i feel less alone in this situation.

@April, I've not really tried yet warm or cold but I'll think about it if a next flare lasts.
@Violet, yes i used to climb a lot in the alps, I don't live so far plus have familiy there. They are indeed very beautiful and landscapes are diverse depending on the area . Plus on a sport point of view the possibilities are unlimited!

I was wondering how do patient manage appointments when doctors are very far away. (I was thinking of maybe travelling to Nantes to get other opinions) I mean the way i've experienced it there is a 1st appointment with doctors for clinical analysis and then other appointments are given for the follow-up actions. But the time between each appontment is always minimum about 3 months.... How do foreign people manage it? Are they able to get hospitalized for several days to get diagnostic and treatment they need, or do they really have to plan several trips several months apart?

[Violet M]

It's not easy when you have to travel. It's been almost 20 years ago but from what I remember, I had to fly to another state several times for nerve blocks. When I went to France for surgery, I stayed in a hotel for a little while, including after surgery. I think it was at least 10 days.

Before you decide on Nantes, you might want to read tonygret's and Dave44's posts on this forum.

Violet

[Chamois]

I've read their posts and indeed i'll probably do some more research before deciding to go to Nantes...
Last week i had two very hard days. I think the pain never went that high and i finished by going to the emergencies. As i expected they didn't do much but gave me a mix of drugs to bear the pain. It finally passed but I can't even say if it is linked to the meds or just a coïncidence..
When days like this happen the pain also get mixed with anxiety. I'll be a father soon and am very worried about my job also, which i love. I'm so afraid not to be able to manage it all together with the pain.. I keep trying to keep hope...
Anyhow i've decided to try hypnotherapy. There is a doctor working at Bautrant's clininc which i contacted. I should see her for the first time mid of march, she seemed very professional. I'll update of how it goes.

[Violet M]

Chamois, my prayers are with you as you go through this difficult time. I can only imagine how stressful it would be having a child and trying to keep your job while you are going through this.

Are your doctors willing to prescribe some stronger "as needed" pain meds for at home in case you have another episode? I know how awful it is going to the ER! When I was going through the worst of PNE, I tried to avoid taking narcotics all day because I didn't want to develop a dependency or a tolerance to the drugs. I mostly took them in the evening and at night so I could sleep. If you need something all the time you could ask your doctor about buprenorphine (sometimes called suboxone) that doesn't cause a tolerance to develop. You might have to get it from a pain management specialist, but it might be worth a try.

Violet

[Chamois]

Hello,
Checking in to give a bit of news. Still no improvement from the january botox injection. I saw an orthopedist surgeon, he told me to make a steroid injection in the hip to check if this could be linked to the labral tear, but he was clearly not believing it. I have an appointment for end of April. I also saw a pain doctor who proposed to apply a qutenza patch. So i've got an appointment next week to try that. I don't really believe it will change something since the pain is not on the skin but on the inside. But let's try...
I also started seing an hypnotherapist but with two sessions i'm not able to tell yet if it brings any benefit or not.
I'm navigating at sight between a few ups and many downs... strange life... Hopefully I get a proper diagnosis soon...

[Violet M]

Hi Chamois,

Sorry to hear that Botox did not help. I tried low dose capsaicin for PN pain and it was helpful - at least to get me to sleep at night. So, maybe qutenza is worth a try. I think it is also capsaicin but a high dose.

Violet

[Chamois]

Hi Violet and all,

So i've started hypnotherapy, 2 sessions done. I can't really tell if it's helping as the past days have been very complicated with strong flares... But I believe that I'm improving at recovering after each flare. Usually the flares are so violents that I remain in a state of shock for at least the rest of the day, if not more, but now it seems that despite important flares I can get over it a bit faster.
A week ago I also got the Qutenza patch applied, which is capsaicin at 8% i believe. The patch is applied for an hour and nurses provide some ice to counter the heat. From what the doctors had told me before the procedure I was expecting much worse than what it actually ended up feeling. It got warm but was not even equivalent to a sun burn. But I suppose it depends on the person, on location of the patch and how the nerve sensitivity is affected by the nevralgy. Personally i am not more or less sensible to heat or cold at the location of the pain.
Then as I mentioned before the past days have not been easy so again I can't tell qutenza had any impact yet... The only thing is that in the couple of hours after the patch was applied i had a flare and it felt different. The qutenza heat was modifying the perception of the stabbing pain i usually get.

Then i have the hip steroid injection, in relation with the labral tear, planned for the 26th of April. I saw a rheumatologist last week who clearly doubted that this tear could be the origin of my random pains, but I don't have anything to lose...

I'll keep updating regularly.

Thanks so much for replying and reading, it really helps to feel less alone and is some kind of an outlet.

Chamois