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Started vaginal estrogen

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  • earthlady
    replied
    Oh my- you certainly have been through the mill on the estrogen trials. I admire your diligence. My sister had surgery for endometriosis and had to have it scrapped off the outside of her bladder. I can see why adding estrogen then could cause problems. So sorry you had to go through all that pain to find out you couldn't use it.

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  • Thingone
    replied
    Estrogen Cream

    Hi Earthlady,

    Just love your name. I first tried Estrace, then Premarin, then Vagifem. Each one caused burning, skin irritation, muscle spasms and bladder spasms and just horrible pain that is barely relieved with medication. Pain scale (9). Flares from estrogen have been the worst for me. I could have a party, serving coffee, chocolate, pepsi, lemonade, and spaghetti and pain resulting from eating and drinking the above would not match the pain from the estrogen. I had trigger points injections vaginally recently and the pain from that didn't match the estrogen flares.

    I then read a post here, and realized it might be the ingredients. I then tried a compounding pharmacy using estriol. I still had horrible pain. I asked the pharmacy what type of base and Ingredients were used. She was very rude and gave me some speech about there stuff is certified following some pharmacy rule. I thanked her and took my business elsewhere. I called another compounding pharmacy and spoke with a very nice lady. I told her how much pain I was in from using estrogen products and that it usually lasted about a week before the pain calmed down. I also asked her if she had other clients that had IC, PFD and VV. She did and was very familiar with the conditions. She compounded me a cream and I went home all excited about finally having a product that would work. It didn't, extreme pain. So I called her back letting her know that I was in pain again. She was very sympathetic. She then sent me 20 syringes filled with different bases, no estrogen. Some were oil—olive oil, coconut oil, Petroleum jelly, and some were creams. She wanted me to test them to see which one worked and if any of them caused me pain. The only one that was tolerable was crisco. So a new batch of cream. Another week of pain. I then tried Divigel. Same thing.

    I think this is the problem:

    Endometriosis implants are thus “self-perpetuating”. Endometriosis located outside the uterus can re-generate itself and spread through self-stimulation, whether or not the uterus and ovaries are present. This explains why some women who have hysterectomy for endometriosis have recurrent pain after total hysterectomy. Hysterectomy and oophorectomy (removal of ovaries) “debulks” endometriosis tissue present in the uterus and ovaries, but it does not remove endometriosis implants present outside the uterus.

    Endometriosis implants outside the uterus and the endometrium produce high levels of inflammatory chemicals called “cytokines” and “prostaglandins”. By releasing prostaglandins and cytokines, molecules responsible for cramping during normal periods, endometriosis can inflame the nearby tissues and nerves, resulting in chronic pain at any time of the menstrual cycle.
    Last edited by Thingone; 05-25-2011, 09:46 AM.

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  • earthlady
    replied
    Thingone - I was just curious if all types of estrogen cause your burning. I was never able to use estrace or estradiol but I am able to use estriol with much success. You may have already tried all types of estrogen though so it was just a thought that another type may be tolerable.

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  • Thingone
    replied
    Estrogen Cream

    For the last three days I have been suffering from self inflicted horrible estrogen flare. I couldn't work it was so bad. I accidently inserted estrogen cream I had compounded instead of my BAC cream. They looked the same in the tubes.

    I have tried compounded cream with all types of bases, gels, all commercial kinds. None of them work for me. I rather have trigger point injections than to go thru this again. The pain is awful usually takes a week before it calms down. I wish you luck and hope you find one that works.

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  • Mothergoose
    replied
    I am going to ask about vaginal vit suppository. The vit E doesn't seem to both me, but then again I was put on the vaginal estrogen for the help it gives the bladder and urethra, not for dryness.

    Thanks MG

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  • earthlady
    replied
    Mothergoose- If nothing else I found the pure E oil to at least help sooth the skin from urine burn if you're peeing a lot. They make vitamin E vaginal suppositories too - of all things- have never heard of them until recently. My GP had mentioned to me that a lot of her patients who couldn't use estrogen were using the E oil. I know that VV is quite different than just a normal skin irritation, but I hope it helps you some from the estrogen burn at least.

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  • Mothergoose
    replied
    bubbe1

    I forgot to add that recently I went to a health food store and bought bag of organic dehydrated coconut, no additives or sugar, it was called coconut chips.

    It has been dried at low temp, so it is not supposed to have any of the goodness destroyed, in processing.

    Anyways they a fairly big slivers of coconut, so I eat them as snacks, is a nice addition too, the nuts.

    I saw the same sort of thing at Costco but it had preservatives and lots of sugar. I can't eat sugar, it makes my blood sugar level drop too low, I am the opposite to a diabetic but I have to avoid eating all sugar and simple carbs, they raise my blood sugar too high and then it drops to low suddenly, so if I don't eat them it keeps my sugar level on a even keel.

    Earthlady

    I bought some vit E yesterday, I bought gel caps, I have been making a hole in the cap squeezing out the oil and applying it to all of my private areas. I think it is too soon to know if it is helping but it does seem to be soothing, and a bonus is it didn't make it worse.

    I have been alternating it with applications of my script, which I am to use 4x's per day. This stuff normally works but it all takes time.

    As I said before I think the vaginal estrogen burnt my skin, which has now set off a VV flare. My kin inside doesn't seem to burn any more but all the skin on the outside is inflamed, all the way from top at front to top of crack at back.

    I see my GP on Tuesday but I am taking my 96 FIL in to see him, so as you can well imagine I probably will not bring this up unless he has time and I get a chance to talk to him alone. I may email him a head of time and update him as to what is going on so I don't have to explain symptoms etc, he can just tell me if he has any suggestions.

    He already knows all about everything as I have been in contact with quite a few times since reacting so badly to the vaginal estrogen.

    I will let you know if he has anything stunning to add.

    Have a good day MG

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  • bubbe1
    replied
    vaginal estrogen

    MG,
    Thanks so much for all the info on traveling and food. You've given me some good ideas.
    Feel well,
    Laurie

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  • Mothergoose
    replied
    Earthladyy thank you for the suggestion of vit e, I will try this. I used to be really bothered by VV, nothing I tried worked, then one day it cleared up.

    Now I an very careful about this part of my anatomy. I have not had a problem in almost 2 years. So this blind sided me.

    I finally found a pharmacy which would make vaginal Valium sup. Actually one I called before that said no, I got a different pharmacist this time and was told no problem, so I got some made, I have not tried them yet.

    bubbe1 When traveling I pack snacks from home for the drive there and flight. Usually almonds, cashews, nut cluster from Costco, or I make cookies, or hardboiled eggs, basically what ever I can think of to PK.

    I take bottled water I know I can drink, of course I can't take this on planes.
    For car rides I will take a bottle of milk on a cooler.

    In restaurants I ask lots of questions wen ordering, I usually order a piece of poached fish, or plain grilled fish, I have had food poising from chicken quite a few times fro chicken so I don't order it too often, I just order what ever meat perfectly plain, and salads no dressings, no cur tons, etc, sometimes I ask exactly what is in the salad, if it has tomatoes or olives I ask to have them held or substitute.

    On curse ships they offer a wide array of foods in the buffet, I just pick fresh raw veggies, cook to order eggs, there is usually more than enough things I can eat. I may eat the somethings everyday, but I do that at home.

    For evening meals in the restaurant you order in, on the first day early in the day I go speak to the head of the restaurant, explain me eating problems, I have lots of allergies too. This person makes note on the computer and then each table has a waiter an assistant waiter, they both know of my situation, and then only the head waiter can take my order and often will over see the cooking of my food.

    The only day there might be a problem is the first day because they sauce and marinade the food ahead of time, but if there is not enough for me to eat, after-wards I go to the buffet and eat a bit more.

    After the first day they bring me the next days menu and I order my next days meal before I leave the restaurant. This order goes to the cook in charge of my section and the headwaiter, so the next day they set out all my food and keep it set aside so I can have it the way I need it.

    They also let me order things that are not on the menu for that night, if I have had something another night which I liked they will let me order it anyways. I really like shrimp cocktail, on one curse they had shrimp cocktail the first night, it was not on the menu again but that let me have it overnight, and they even served me a plate of them not just the half a dozen served in the cocktail. I can tell you the rest of the people at our table were envious.

    Sometimes if the veggies or things I can't eat I will just order a double order of a veggie I like.

    This works for me, only once on about 10 curses did they feed me something I was allergic too, it was supposed to be plain grilled shrimp, I knew right away they were not plain, I told them they were not plain, they argued they were. I had only let one shrimp touch my tongue, and was up all night with chest pain and coughing. I didn't argue it, I just didn't eat it. I figure they are so good to me. I didn't want to get the cook in trouble.

    I also buy water buy the case and take it on the boat, and drink it, the water on the boat is not good, and to buy their bottled water is quite expensive. They see me bring this on and have never said a word about it.

    Once we figured out cursing was good for me and we like it we try to holiday that way now.

    Hope this info helps you.

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  • bubbe1
    replied
    vaginal estrogen

    Mg,
    May I ask you a question?
    How do you manage to eat the same foods as usual when you're traveling? My husband and I are going to Michigan for our grand daughter's Bat Mitzvah and one of my biggest concerns, besides the plane trip, is food.

    I think Earth Lady's idea about the vitamin E is a good one. It's very soothing.

    I hope you are completely healed very soon.
    Laurie

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  • earthlady
    replied
    You've probably already tried this, but pure vitamin E oil has helped me a lot with the skin burning in that area. Sorry the VV is still going. I've had no reactions at all from the compounded estriol. I was concerned I would never find anything that didn't burn and irritate my skin and I so wanted to get some estrogen in there, so I'm thankful it's working.

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  • Mothergoose
    replied
    I have done 3 transatlantic cruises and I love them. We just don't buy any of the tours off of the boat because of not know day to day how I will feel, and for the most part I try to stick to my routines, get up same time as normal, eat the same things, and go to bed even if it means missing out on some stuff.

    Thanks MG

    PS It has been one full week since I started to flare from vaginal estrogen, IC flare is about 1/2 way better but VV flare is still going strong, really raw sore skin.

    Who well hope it will clear up in the next few days.

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  • earthlady
    replied
    Yes it certainly is unpredictable. I applaud you for even thinking about a transatlantic cruise. Sounds like you don't let this condition hold you back. Good for you.

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  • Mothergoose
    replied
    I had a letter she just didn't believe me, next time I will just go with lots and make sure I have a good supply at my other house.

    Also now my husband and I are each just using this med once a week so we don't need any where near as many needles.

    It is just so funny when you go somewhere and people ask you how long you are staying and you reply I don't know I haven't bought a return ticket yet.

    Most people plan out everything they do, we do not, we for the most part just wing it.

    Also with all of my medical problems I want to be able to come back to Canada when ever I feel I want or need too.

    But i also want to be able to jump on a cruise ship and do a transatlantic crossing if the opportunity arises, you just never know, and it is hard to plan for all scenario's, especially when you add in an unpredictable illness.

    But that's way we chose to live out lives, for now MG

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  • earthlady
    replied
    Maybe you could get a letter from your doctor verifying why you may need the syringes so that you could present it to the pharmacy-?? My uro years ago volunteered to supply me with a notarized letter from him explaining my medical condition at the time. It was really helpful.

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