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jcwat101
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| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1056 |
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Posted: Tue Aug 18th, 2009 20:56 |
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Is anyone on ERT? I think a little estrogen cream is acceptable on the MP, correct? I am thinking of going on the insert estrogen tabs. I have been swimming in the evening in a salt water pool and the dryness I already have has increased ALOT!! I actually tore a little after swimming one evening just going up the steps to my room .... I would HATE to stop swimming ....but this dryness is at the ridiculous point. I have tried the OTC replenishing stuff ...NO luck! Thanks Ladies ... Lee
As I said in Nikki's thread recently on the MP board:
<<I think we are agreed that the MP guidelines suggest trying to go without HRT if you find you can do so tolerably. If you can't, then use only as much as you really need and wean off of them when you can.>>
A number of people have done the MP while using estrogen and/or progesterone cream.
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Lee
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Posted: Tue Aug 18th, 2009 23:11 |
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| Thanks Joyce! I really am trying to avoid this but I think the pool work-outs may justify trying a little cream. I have not worked out since starting the MP almost 5 years ago. I am a swimmer and need to get back in the water .... Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Thu Sep 10th, 2009 18:13 |
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Ow, Lee! A tear???? Woof. 
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Karna
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Posted: Fri Oct 16th, 2009 04:24 |
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Okay, ladies, I need some advice. About five weeks ago I started having pressure/discomfort in the urethra and down through the pubic bone. I wasn't alarmed as this was a pre-MP problem for me. But a couple weeks later, on day two of my period, I was abruptly awakened by intense urethra cramping and shooting/stabbing pains down through that area. It was so bad I considered going to the hospital but decided to pop Benicar like candy and take ibuprofen. I managed to make it through(God bless my husband for waiting on me hand and foot) and needless to say I was exhausted.
The pressure/discomfort continues to bother me everday, some more than others. I feel like there may be some hormonal connection as it seems to worsen around the time I ovulate and have my period. I'm dreading the start of my next period if it is anything like last month.
Also to note is the fact that it worsens whenever I lay down. I don't know what it is about that postition that makes it worse but it makes it very uncomfortable to go to bed each night. My bladder doesn't bother me. It doesn't hurt to pee and my urine looks normal. I don't have any weird discharges. Anyone been through something similar? I would love to get some relief soon. It has never lasted this long or been so intense.
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CFS/Food allergies,sensitivities Ph1May08 Ph2Oct08 25D8(Apr09) low lux home, limited outings covered up, enzymes
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Hogan
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| Joined: | Sun Mar 16th, 2008 |
| Location: | Pennsylvania USA |
| Posts: | 7 |
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Posted: Fri Oct 16th, 2009 13:04 |
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Karna,
Have you ever been checked for pelvic floor dysfunction? I struggle with this and IC. In PFD your pubic bones move around and it causes great pressure and pain depending on how they are positioned. I have a PT who specializes in PFD and when I am struggling I just need to go and get realigned so to speak. Most teaching hospitals have a practice that specializes in pfd. Just a thought.
Karen
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CFS and FM diagnosed 1990, bad relapse after florquinoline 2007. Chronic lung congestion, 1,25D=69 25D=26
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jcwat101
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| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1056 |
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Posted: Sat Oct 17th, 2009 02:19 |
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Another thought is that you may want to try adjusting your MP meds to reduce IP and see if that helps.
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Lee
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Posted: Sat Oct 17th, 2009 13:17 |
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I agree Joyce! IP has hit in crazier places on me .... Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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laura1814
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Posted: Tue Oct 20th, 2009 08:32 |
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I think I get something similar, but not nearly to the degree you describe. I associate it with an itchy feeling I get all over under my skin, not external. It is a restless feeling, sometimes feels like little bugs crawling around--I like to think that that is literally what it is  -- but anyway it often seems to "focus" on the urethra, be most intense down there at least in that general area. It's not a traditional vaginal itch but it can be hard to sit still.
More Benicar helps a little, but I don't have any suggestions for dealing with it. I will try to pay attention to whether I associate it with periods, though I'm not having regular periods right now. (I am having spotting today and yesterday for the first time in months, and have been experiencing this feeling the last few days, also for the first time in quite a while.)
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Tue Oct 20th, 2009 23:55 |
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Karna,
Sorry you are in so much discomfort, and I hope you are feeling better.
I must admit this whole discussion is giving me the willies (no pun intended ). I fell on the stairs of a set of monkey bars from standing position to the body wrenching position of landing on my urethra when I was seven. Had an infection, but my mother did not take me to the doctor (cold cream to ease the heat of the infection was my mother's solution)... no, that injury was too personal a matter to call in a doctor. Then, within the year I developed a hernia (evidently the kind boys get, which amazed doctors) and had to be operated on for that. They thought I'd be in within a couple years with one on the other side, but I fooled them.
Had to have my urethra stretched at age 30 b/c my bladder had become rigid; seems my urethra was about the diameter of a 2 month old's as a result of in the injury and the force needed to urinate affected my bladder. The process was so painful I could not finish it even though I experienced a lot of relief.
Needless to say, I have not been welcoming the day when I might see IP in this area. So you guys are just about scaring the pants off of me!
I just hope you are still around when I am screaming loud and clear on the Grump Stump.
Hugs to all... as Freddie says, We're all in this together. (I think Freddie says that... or is it Barney?)
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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laura1814
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Posted: Fri Oct 23rd, 2009 01:50 |
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Hmmm, when I was 7 or so I had an accident falling on my brother's bike. I bled but didn't go to the doctor, though I remember lots of pain. I realized much later in life that my hymen was shattered, but it never occurred to me that I had a greater injury.
IP is so interesting!
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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Karna
Member
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Posted: Fri Oct 23rd, 2009 05:04 |
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| Thanks for all your thoughts, ladies. I have been so unwell this past week dealing with other problems, I have hardly noticed the pressure but it is still there a little. Just one more fun thing to deal with on our MP journeys! What did Forrest Gump say? "Life is like a box of chocolates. You never know what you're gonna get."
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CFS/Food allergies,sensitivities Ph1May08 Ph2Oct08 25D8(Apr09) low lux home, limited outings covered up, enzymes
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Fri Oct 23rd, 2009 13:00 |
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Glad to hear you are getting some relief Karna.
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 529 |
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Posted: Wed Oct 28th, 2009 19:01 |
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Glad to hear that's improved for you, Karna. Just wanted to add my voice to the choir that I've had this IP also. Upping benicar and dropping my abx made it go away. First time it happened, I didn't even know how to ask the doc for help. A urethra cramp????
Oh, shut up and help me pee.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Karna
Member
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Posted: Wed Oct 28th, 2009 20:28 |
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| Too funny, Juanita! I did exactly what you did, though, and am slowly feeling better. My whole body felt like it was giving out on me there for awhile so I knew it was time to back off on the abx. I'm sure it's not the last time I will get cramps in unusual places!
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CFS/Food allergies,sensitivities Ph1May08 Ph2Oct08 25D8(Apr09) low lux home, limited outings covered up, enzymes
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tussilago
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| Joined: | Tue Mar 23rd, 2010 |
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Posted: Wed Mar 24th, 2010 05:31 |
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Hi, I am wondering if anyone else will share their experience with me on this perhaps embarassing subject...
since about two/three years before I get very sick in 1996 (when I was 16 years old) I started to feel that It was not nice to kiss guys because I could not stand the taste. Later I also could not stand being touched as I feel that everything hurts. Before I was about 12 years old I thought it was just fine/nice to kiss a guy, but then again I was not feeling so very ill as I do from 1995/96 up to today.
I wonder if someone else have had problme with this and if this problem has gone away while on MP? I have much greater problems than this to worry about but I still wonder.
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1417 |
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Posted: Fri Mar 26th, 2010 04:42 |
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I can't speak to the kissing issue, but people with TH1 illness often become sensitive to smells and develop phobias.
I can address the issue of not wanting to be touched. I'm assuming that this extends beyond guys to everyone (because you didn't limit your description of the problem to guys). Many people develop sensitive skin or areas of sensitivity where touch actually hurts or is annoying if not painful. I had an area on my back and when someone touched me there I wanted to punch him/her. It wasn't so much that it hurt as much as it generated the desire to punch the person's lights out. What the heck is that? I'm assuming neuro related TH1... we have nerves all over and they lead to the brain, the area that generates most feelings and mood states. I also feel pretty much the same way if someone touches the top of my head (though at times that hurts), except I just want to yell at the person.
I have every reason to believe that these sensations of mine will go away.
I can't speak to your reactions to guys, though. You've been sick since you were young. Who knows who you are? And who you will like? And who you will want to be with. (Liking someone and your body liking the person can be two different things.) When well (or better), we can always hope that you'll find a suitable mate. You're only 30(?); you still have much of your life ahead of you.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Lee
Member
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Posted: Sat Mar 27th, 2010 20:53 |
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I agree that most physical closeness is too painful. I have lumps in my upper arms, chest, thighs, hips and back that are always sore to some extent. I am hoping the organisms that lived inside are long gone. I am now waiting for my body to "remodel" and dispose of the remains.
Working in Va hubby can only come home once or twice a month. He will gentle rub my back and hips after I take a full dose of abx. It is more a scratching than rubbing but it does cause alot of IP and more soreness within a few hrs. Being norwegian he was taught ways of massage and knows what he is doing. I may do an epsom salt bath after too.
I have learned how to shut my immune system down with meds like Lyrica. If I am really bad will take pains meds with the Lyrica. This was prescribed to me and while I cared for my dying mother, I dosed both daily. I was practically living the the hospital with mom from 9-7pm for weeks. With the full abx dosing I did not have much reaction of IP and was able to cope with the bad situation. I also remained fairly capable and was able to help alot. I am sure my immune system was totally "off". If I am really bad with IP, like last week with a stomach flu, I do one dose of Lyrica to calms things down. I realize this is slowing my healing but sometimes you need a break ....  Lee
____________________
2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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