Health Organization for Pudendal Education

Hi Everyone
I may have to travel a long way by plane- 5 hours cross-country to get the pain control I need. I have considered this for a long time but my main roadblock is that I can't I sit at ALL ,so how the heck can I fly a commercial airline to from NYC/Newark to California?

I could stand for a good bit of the trip, but at the moment standing hurts badly too. The taxiing from the gate prior to take- off, would be the hardest past, esp if there's a delay in taking off (sitting normally in the plane seat would be really hard).
Once my butt makes contact with the chair the anal throbbing starts.. When i stand up there's afte-rpain, which for some reason lately has been brutal after I've tried to be more active. It takes a long time for that pain to wear off.
But sometimes we have to do this to get the appropriate medical help.
For those of you who have flown distances with high level sitting pain, would u have any tips on how to do it,without putting yourself into agony.

Ive' thought of buying a few airline seats in a row and lying across them' while putting my head in my husband's lap. It would be awfully epxensive tho. Are there times of day/night or days of the week when the airlines are less booked and it would be easier to get a group of empty seats together? Another thought...some airlines have a business class seat that reclines into a bed (what I really need!).This would cost a fortune which we don't have) but I thought maybe I could use my American express membership awards points to pay for the tickets? Also Im not sure if my trip across the US is long enough for a plane to have seats like that.. ie ...( are these bed/seats only used for super long trips like to Asia or Australia..?
Has anyone called the airlines, explained their pain issue and had the airlines help them find a grouping of seats or put them in first class?
What about taking meds that knock you out for the trip ( ie a few Xanax or a couple Clonepin to put you to sleep??) This would help with trip but probably wouldn't prevent the after pain, I assume. But when drugged the muscles may relax, and I wouldn't clench so, maybe no after pain would occur.
I had an MRI last year. I had anesthesia so I wouldn't feel the the pain of my anal area making contact with the table. I didn't have any afterpain, probably cause I was asleep and relaxed.
Since I've mainly avoided sitting for a few years, only "perching" at times when Im up to it, I always wonder if I would be hurting the nerve more by trying to sit, even if Im drugged? Doc s have never given a straight answer on that question.They just don't know for sure.

Anyway any tips on how to survive and plan for a 5 hour plane trip ( 10 hours round-trip) without causing worse lasting pain would be so appreciated.
Thx in advance!

Kathy,
Some 20 years ago I used to fly DC to California on United for a 5 hour flight and got first class with points that had a reclining seat. Your flight sounds long enough so a big enough plane to maybe have that. Since I can sit I just stand for the time the plane has the no seat belt sign on in the first aisle bulkhead seat aisle seat (also short enough to stand in front of my seat) and it was only a 1 hour flight. I hope you find a solution.
Janet

I purchase 2 seats when I fly so I can lay down. The first class seats don't recline enough and it is usually cheaper to purchase two seats in coach than one first class. Also, get a doctors note so you can stand anytime the sign goes on to stand. I usually try to purchase seats as close to the back of the plane as possible. I take ice packs to sit on. As long as the ice packs are hard the airline will let them go through security. But, I have a doctors note just in case I have problems, which I never have when it comes to the ice packs. That is because people who travel with medications such as insulin must keep them in a cold pack. If you can use a cushion with a hole that might take some of the edge off of things for the period of time you have to sit. And lastly drugs. I take extra pain medication when I travel. It does take a few days to recover from travel. Not easy for those of us who find it so difficult to sit.

Thx NYT for all your advice!
If if do go, I will use all these ideas\!...Appreciate your help. My pain is so severe currently that air travel seems almost impossible .Hopefully that situation will change soon.
Janet thank you also for your suggestions..The bulkheads are a great spot for more room so a couple seats across in a bulkhead area sounds good.
Thanks!

Hi all,
As mentioned I am contemplating a cross country flight to see a doctor,to address my severe pain which has escalated lately.
Tho flying will be extremely painful, I have heard from a doctor I trust and respect, that the combo of the drugs tramadol and topamax have made it possible for patients like me to tolerate a pain trip.I will also try all the thoughtful suggestions I received as well! (lots of logistics to figure out ,if we do this!)
I seem to remember someone in our group using Topomax and another drug for their sitting pain,but I could be mistaken?

Has anyone tried and had luck with Topomax and Tramadol?
My pain is right in the anal opening and has lately gone deeper, so its hard to find a sitting position that doesn't impact on that area in some way.
Thx in advance for any responses folks!
Kathy

Have you tried any suppositories such as Valium or Lidocaine either vaginally or rectally to help with the pain.

I will be traveling in the coming months as well. Sometimes if I have to sit, I lean forward so my weight is more on my thighs than rectum. Probably not ergonomically correct, but it can help.

I've been taking topiramate with pregabalin since spring last year, and using tramadol for breakthrough pain - when I have had any. This has been an amazingly helpful combination for me, I was completely painfree for a good while and indeed am still pretty much painfree now if I am careful, even though we have been reducing the dose to find the lowest level at which I can cope.

There have not been very many of us using topiramate at all. Topiramate enhances the effect of GABA meds (including pregabalin), it has no interaction with tramadol.

If you do start using topiramate, it might be an idea to think about starting with the lowest dose available and working up from there, in order to try to avoid any possible problems with side effects. Tramadol can be added in as you need it, no problems there. I have been using that for ages.

I do hope this works out for you.

I have flown many times over the years, I normally bring a letter asking if I can stand up once the seatbelt sign it turned off staff are usually very helpful with this and have let me stand as long as they can if for medical reasons. I always take my cushions and also inflatable ones to add to the comfort along the way when I cannot stand, I also take instant ice packs to help. I always take my meds as I board the plane so that they are effective for the duration of normally a 5 hour flight. Payback is always there, I try to think that once im at my destination I can chill out and can reward myself with having done that....yes it takes my about five days to achieve that feeling but for me its good to be in a warmer place. Sometimes a little or a lot pain has a huge gain, I lie on my sunbed and feel the sun on my face in Winter and say phew it was worth it whilst hugging ice! Strange but so true for me.

Hi Ladies
Thx to you all for you suggestions.
If I do have to go out there and take the long flight I will use all your advice and do the best I can. At them moment I bring cushions with me, to lie on at appmts etc but can't sit on them yet ...hope that changes.
It sounds like it's best to purchase 2 seats etc to lie across.
Thx Calluna for the advice about Topamax. It would only be used for the trip, unless I find the combo really helps with sitting.
It may be best to take meds to help me sleep a lot thru the trip so I don't feel much and hopefully keep muscles relaxed. I am worried about the after pain as I get if I after any sltuation that requires leaning , lying on a hard doc's table,perching or too much standing.
Thx again for suggestions.