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the ongoing saga of bloody pain
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Has anyone here has uterine polyps? I have had my period/bleeding four times within 8 weeks now...and the gyno found a polyp that keeps growing. What are your experiences? Has anyone had the unfortunate experience of having a cancerous polyp?
circleknot
This post ran really really long, and I don't feel like I covered everything I could have discussed.

www.travelswithpain.com

The next post in the Minimizing Plane Pain series should be up tomorrow...
10th-Nov-2009 06:32 pm - Minimizing Plane Pain
circleknot

Air travel with chronic pain sucks. And as I dug into a post about the suckage, I discovered that this is a *big* topic! When the outline reached 500 words, I realized that I needed to break this post into parts. 

Minimizing the Pain on the Plane, Part 1 of 4

A reader here mentioned that I have not addressed the issue of pain during air travel. As Travels With Pain is only a few months old, there are lots of topics that I haven't covered yet, and probably a whole bunch of topics I won't necessarily think of myself. If you've got a trip coming up and want advice, if you're looking at a method of travel I haven't talked about, if you want information about a destination...let me know! I want to create a useful and fun blog, and I can't do that without a community of active readers. You folks here--folks who travel and want to travel with chronic pain--are my core community. Any advice and suggestions you can give me for Travels With Pain will only make it better.
9th-Nov-2009 11:17 pm - pt
alias - undercover
A couple months ago I had posted asking about anyone's experience with physical therapy, specifically the pelvic floor muscles. Well not many people had - I think maybe one person who responded had has the therapy - so I thought I'd do a little followup post.

It has been AMAZING for my pain in terms of pain relief! I still have daily pain pretty much and the periods I've had have not been pleasant, but the pain level has been low. Maybe a 3 on average and the flares only about a 6 or 7.

Its basically a lot of stretches (at least has been for me) and the proper technique and form. Now I'm at the point where I've got my next appointment scheduled three weeks out.

I'm incredibly pleased with how this has worked out and wanted to share a rare bit of positivity for our community ;)
4th-Nov-2009 05:16 pm - Give Yourself a Break Too!
circleknot

Though this post is specific to travel, the theme applies to daily life too. Be nice to yourself and to your body--it may not be perfect, but it is the only one you've got.

Giving Myself (and Everyone Else) a Break
30th-Oct-2009 08:33 pm - Hi Everyone!
Hey everyone! I am new here. My name is Amy, I live in FL. I have my first lap Nov 13. I'm very very nervous. I have severe hospital anxiety. My doctor is pretty sure I have Endo, but is doing a Lap so I can be "formally" diagnosed. Needless to say...I'm extremely nervous, any tips?
27th-Oct-2009 02:08 pm - Doctor in Ft. Lauderdale Area
Hey Everybody,

In less than 2 months I'll be graduating from law school and moving to Florida. I need to find a really good GYN or RE in that area. If anyone has any suggestions It'd be much apprciated.

Thanks so much ladies,

Meg :)
23rd-Oct-2009 04:53 pm - Itchy Laparoscopy Scars
jill, unsure, curious
Hi all! I hope today is finding you well.

I just had a quick little question:

Does anyone else have scars from their lap that itch like crazy? It's been a year since the surgery and yet both of the side scars (I had three, one in the naval and one by each hip) will get insanely itchy sometimes.

The scars get an irritated red looking spot on them, kind of in the middle. Sometimes it looks like it's a little swollen but not always. And they itch like crazy, even though it kind of hurts to scratch them. It took a very long time (6 months?) for my scars to finally stop hurting if I touched them lightly, I don't know if that's relevant.

When I mentioned them to my doctor he said that endo had deposited in the scars and to be aware that it'd flare up around my period. So far it doesn't seem to care at all about bleeding (It's been 7 months since I've bled at all due to suppression therapy), and it's been continuing off and on for a year, and so I can't tell if it really is endo.

And so my second question:

If they do itch, what the heck can you do to get them to stop? I'm going crazy here. Lotion has been my go to thing to prevent me from scratching them but it doesn't do a damn thing.

Thanks!
23rd-Oct-2009 05:54 pm - Endo or Preggers?
Oh boy...or girl...

Read behind Cut )
circleknot

My latest Travels with Pain blog posts. Sometimes I don't manage to get out and hike every day, but I love traveling anyway. So there, traitorous body!

How to pick a good hotel room just in case you end up spending a lot of time in it:

http://travelswithpain.com/2009/10/21/twp-travel-tip-get-a-room-with-a-view/

And why it's worth bothering to get that room in the first place:

http://travelswithpain.com/2009/10/22/room-with-a-view-part-2-why-do-i-bother/

22nd-Oct-2009 07:30 am - H1N1 vaccine and endo
so yes i got it yesterday. nothing more then my usual pain at bedtime.
21st-Oct-2009 09:56 am - Lupron questions and doctor questions
angst
If you've done Lupron how long were you on it? How many injections did you get? I just had my third injection and my doctor has a 4th planned again in 80days. BUT he also told me he kept women on Lupron for 8-9 years in the past.

I tried to keep an open mind because this doctor does have the skills but this is the second time I almost left his office in tears and I don't trust him. He examined me and argued that it hurt! And he promised me that after 6 months on Lupron we'd talk about surgery but instead he wanted to do another injection and then a 4th in another 80 days after which he said we'd discuss surgery, maybe. 

So my other question is does anyone have tips on searching for a endo specialist in Northern California? I won't name this person I saw other than to say it was at UCSF because like I said I'm sure he has the skills and maybe very helpful to women who have desire to keep fertiality but I don't. I just am tired of pain and being on pain meds.

Thanks.
15th-Oct-2009 05:38 pm - Total Medication Planning Fail
circleknot

Since so many people seemed to like my personal post about the wheelchair at the airport, I thought I'd go ahead and do another one like it. Granted, this one makes me look a lot like an idiot.

Total Medication Planning Fail
12th-Oct-2009 07:29 pm - doctor rant
storm
i've been going to the mayo clinic for a couple of years now, and they did one of my laps, but i've had a few different doctors during that time. today i had a new one, who just didn't seem to know anything about endo at all.

he asked me probably four times whether i'd been surgically diagnosed with endo, while my records were right in front of him showing that i've had 3 laps.

he suggested that i just stop taking the birth control for awhile to "let everything clean itself out". i had to re-explain that if i were going to do that, i would need to free up my schedule for the next several weeks as i would be on the floor the entire time unable to function. (he still thinks i should do it).

during the exam, he had the nerve to tell me that it "must not hurt THAT bad" since i wasn't screaming in pain. um, no, it's called pain tolerance...when you're used to a certain level of pain most of the time, it becomes a baseline level for you. just b/c i'm not in tears right now doesn't mean it doesn't really really hurt.

then, after an unnecessarily long conversation in which i had to work hard to convince him that i might as well swallow a sugar cube instead of advil for all the good it will do, he prescribed me ponstel. which i am finding out is no longer manufactured, much less used for endo pain.

so i'm back where i started, with nothing for the pain except handfuls of OTC pain relievers. and i can't really try and go see another doctor at mayo, b/c it will just look like i'm med-seeking.

so what is the deal with ponstel anyway? and have you had to deal with similar doctor situations?

12th-Oct-2009 06:33 pm - Exhaustion
Daisy
I'm hoping someone can help me with this fatique. I loose weeks at a time because I get so exhausted that all I have energy to do is get out of bed to eat and then it is time for a nap. This fatique is so bad that I have a hard time keeping my eyes open during the day. Has anyone else dealt with this and found a way to give yourself some energy?
8th-Oct-2009 11:39 am(no subject)
Lennith: Take flight|| By me.
Hi ladies. I thought you might be able to help answer this question for me.

I've been having severe pain for the past few months and a few weeks ago my GYN found a cyst on my right ovary. He said it was something my body would take care of. The pain is fading, but now i'm bleeding. Is that normal after a cyst bursts? FYI I have no periods. I'm on continous BC. (A ridiculous amount of norethindron. Basically 15x what people normally take) I always thought ovarian cysts were on the outside if they were related to endo. Thanks!
8th-Oct-2009 07:29 am - Hysterectomy
Higu|Hanyuu|Moon
Over a month ago, I wrote about having my intervaginal ultrasound. I did get the results, and they were as you all stated. The results were not at all indicative of endo. On the upside, the results that I predicted (not having ovarian cysts) were gained. At least, on the right ovary, which is the one they were able to look at. They want me to do an MRI now, but I don't have the money to pay for that out of pocket, so I'm SOL until at least January, unless I can procure some SSI or Disability. Or both. Then health insurance get.

However, I have been discussing options to take after I, eventually, have my lap. I've pretty much settled on having a hysterectomy. I'm aware of the risks, especially to my sex drive, as well as the chance of having a prolapsed vagina and the hormonal problems. I know I won't be able to procreate, which is fine. I don't particularly care for, nor want children.

I was wanting to know some personal opinions from the members of this community. Personal stories, and such. Does this sound like a good idea? Or should I consider alternate options?

I'm currently taking Seasonique. I'm mostly happy with it, it's just a pain to take every day and to even remember to take it.
7th-Oct-2009 10:51 pm(no subject)
Kristen Bell
I was wondering if anyone had any experience applying for disability at college/university.

I am currently looking into applying to a different university to transfer next fall, and on the application there was a place where I can apply for the disability services, and I'm not sure whether it is worth it to apply because of my endo (which is being fairly well managed at the moment), and I also possibly have IBS.

Anyone have any experience with university disability services? Would it be worth it to apply, even if I don't always need their support? And also, anyone who has used the services, do you need to state it on your application, or can you apply for it later?

Thanks in advance for any help anyone can provide.
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