Want to help many women with endometriosis and IC? Here's How!

[1tuffcookie]

Hi, everybody!

I'm writing an article on endometriosis and IC for the Endometriosis Association. It will first appear in their newsletter, then later in a book. How you can help is by allowing me to interview you online for the article. The EA is wonderful about privacy--if you prefer, we can use only your first name and the first initial of your last name, or even change your name. I know this because I wrote 2 articles for them about 8 years ago that ran in their newsletter. Later, they were published as chapters in their book The Endometriosis Sourcebook.[/I]

You could help thousands of women if you speak out. I say this because The Endometriosis Sourcebook is in its seventh printing and has sold over 52,000 copies. Their first book, Overcoming Endometriosis went through 10 printings and sold over 60,000 copies.

Please let me know if you're willing, and I'll post a list of questions. Then you could either post your answers or send them to me in a private message.

I hope to hear from some of you soon.

Andrea

[holles]

i'd love to help. i'm a member of the endometriosis association also. keep me posted.

[sleepyangel30]

i would love to help too i have ic, you can use my whole name if you like, im not ashame lol. :angel: its true it would help thousands of women if we all speak out, nothing can be done if we keep it all in, the truth can set us free.

[Audrey Rose]

Andrea,
We confirmed last year that I do NOT have Endo.
But I wanted to thank you for your efforts in this area!! I think it is awesome that you are letting ICN members participate!! You are such a blessing.

I noticed that you are a new ICN member. I want to welcome you to the family! There are lots of wonderful people here!! When you need support and encouragement, we are here for you!!
:welcome:

Good luck with the article!!
:thumbsup:

[Audrey Rose]

Oh yeah, I wanted to tell you that I love your user name!!!
:bouncy:
"1tuffcookie" is awesome!!!

:flower:

[HillaryD]

I will most certainly help!!!
:kiss:
Hillary

[jala]

I even have pictures. Jala.

[1tuffcookie]

Holly, Angela, Audrey Rose, Hillary, Jala, Katrina, and anyone else who wants to help:
THANK YOU!:bow:

I decided to divide my questions into at least 3 different posts, and this will be the first batch. The reason is, one woman (not in ic-network) agreed to be interviewed, so I e-mailed her numerous questions. I think she was overwhelmed, because I've not heard from her since!

Remember to please let me know if you don't want your first and last name used in the article.

Here are the first questions:
1. How old were you when you got your first period?
2. Were your periods horrendously painful and/or heavy from your first period, or did they get worse later?
3. When were you diagnosed with endometriosis, and how many doctors did you see before you were diagnosed?
4. Before your diagnosis of endo, did some doctors tell you it was "all in your head?"
5. When your endo was diagnosed with a laparoscopy, where was the endo found? (For example, on the bladder or ovaries)
6. During the diagnostic laparoscopy, how was your endo removed? (lasered, cauterized, or cut out with a scalpel)
7. Have you had more than one surgery related to endo? If so, please describe them.

Thanks again! :)
Andrea

[holles]

Here are the first questions:
1. How old were you when you got your first period? 13

2. Were your periods horrendously painful and/or heavy from your first period, or did they get worse later? always painful and heavy, but got increasingly worse as time went on

3. When were you diagnosed with endometriosis, and how many doctors did you see before you were diagnosed? dx in november 2002 by a new gyn. had seen 7 gyns, but only mentioned the pain to 2 or 3 of them
4. Before your diagnosis of endo, did some doctors tell you it was "all in your head?" yes, that's why i quit mentioning the pain to them; i was told it was normal to pass out from the pain

5. When your endo was diagnosed with a laparoscopy, where was the endo found? (For example, on the bladder or ovaries) on the bladder, on the left uterosacral ligament, in the cul-de-sac area (close to the cervix), scattered around in the peritoneal lining, behind some peritoneal pockets around the uterus

6. During the diagnostic laparoscopy, how was your endo removed? (lasered, cauterized, or cut out with a scalpel) cauterized

7. Have you had more than one surgery related to endo? If so, please describe them. yes, had excision surgery 7 months after the first surgery to remove more endometriosis

hope this helps. you can use my first name (holly). oh, and my email is now mamacab@hotmail.com

[Babs RN]

Would love to help, was dx with endo in 1998 and IC in 2003. Let me know what you need.

Barb

[Babs RN]

You may use my name if you'd like Andrea...here are my answers

1)11
2)Yes they were bad from the beginning and continued to get worse as I got older. Lots of pain, and huge clots and bleeding.
3) Had problems since my teens, probably saw 6 or 7 GYN's in that time who called it all PCOS
4)You betcha. Was also referred to psych during this time. Was a virgin until I married my husband at 26 so they thought I had "sexual issues" too.
5)Laparoscopy--stage IV--multiple endometriomas on each ovary, posterior cul-de-sacs bilaterally
6)Initally cut out with scapel with initial dx scope, had oopherectomy in 1999 on right, then hysterectomy with fulgration of what was left
7) 4 dx scopes with adhesionolysis and fulgration, right salpingo-oopherectomy, abd hyst with LSO

Feel free to ask me anything else in detail--I hope I can help someone else

Barb

[1tuffcookie]

Thanks to all of you who've answered my questions so far. :D Babs RN, have you cleaned out your mailbox yet? I keep trying to send you a PM, but it won't go through because it says your box is full.

Oh, I think I forgot to mention that I was diagnosed with endo back in 1989, and IC in '93. Feel free to ask me questions, too.

Here is the second batch of questions:

1. What do you think caused your endo and your IC? Please explain why you came to the conclusions you did.
2. Besides surgery, what other treatments have you tried for endo, and how did they work? Please include alternative treatments if you've had any.
3. What side effects have you experienced from endo treatments, and/or complications from surgeries?
4. Besides endo and IC, what other health problems do you have? Do you think they are all connected with endo and/or IC?
5. Does anyone in your family have endo, IC, or any related diseases such as IBS, fibromyalgia, etc.?
6. Either now or in the past (or both) have you had bladder symptoms such as urgency and frequency that worsened a week before your period or during your period?

[Katrina]

Looks like this is working for you!!!! You will get my answers in an emial. I am so happy you are getting success here.:kiss: :D :hi:

Your Friend,

[holles]

1. What do you think caused your endo and your IC? Please explain why you came to the conclusions you did.
i don't know what caused the endo. i only have early stage, but i've had pain for almost 20 years. so maybe it's just near certain nerves, or maybe my body is trying to fight it, just not doing a good job. i really don't know. mom didn't have it. she did have a hysterectomy at age 31, but that was because of prolapse, not endo. as for the IC, i didn't notice any problems until after my first laparoscopy. i couldn't urinate after the surgery, and they cathed me a few times, even sent me home with a foley. the urgency and frequency started a few weeks later, but never got really bad. about 4 months after the laparoscopy for endo, i began depo-lupron to treat endo. about a month into that, i wasn't able to urinate at all. my doc was finding blood in my urine (never had it before). we did an IVP that was normal, a urodynamics stress test (humiliating) that wasn't normal, then a cystoscopy combined with a laparoscopy. the cystoscopy showed IC and a "sludgy" right ureter. the endo had come back, but was showing signs of treatment from lupron (pathology report stated that).

2. Besides surgery, what other treatments have you tried for endo, and how did they work? Please include alternative treatments if you've had any.
treatments for endo, 2 surgeries and depo-lupron. so far, that's it. i've read about using letrozole long-term. i'd like to see more research and maybe try it sometime. the second surgery was excision, and it seems to have been more successful.

3. What side effects have you experienced from endo treatments, and/or complications from surgeries?
surgery complications: wasn't able to urinate after the first surgery until the next morning. other than some surgical scars, that's the only problem i had. i'd gladly do it again if needed.
side effects from endo treatments: only did depo-lupron. experienced increased pain, cramps, fatigue, deep pain in the joints, insomnia, bleeding for several weeks, hot flashes, weight loss, severe depression, couldn't taste food, high cholesterol (went down eventually), fuzzy thinking, heart palpitations, panic, difficulty urinating, painful urination, vaginal dryness. don't know if it's a coincidence or not, but most of my urinary problems got a lot worse with lupron.

4. Besides endo and IC, what other health problems do you have? Do you think they are all connected with endo and/or IC?
graves disease (auto-immune hyperthyroid); yes i do think it's somehow related to endo at least. it's hard to decide if the frequency and urgency is caused by the hyperthyroid or the IC sometimes. but my thyroid gets tested pretty regularly.

5. Does anyone in your family have endo, IC, or any related diseases such as IBS, fibromyalgia, etc.?
dad has multiple sclerosis.

6. Either now or in the past (or both) have you had bladder symptoms such as urgency and frequency that worsened a week before your period or during your period?
both now and in the past. mainly the problem in the past was bladder pain and severe bloating because of the endo that was on the bladder (kind of between the uterus and bladder). now, the frequency and urgency come and go at all different times of my cycle.

[Babs RN]

Andrea,
I will make sure my box is cleaned. Thanks for asking....My home number is 702-617-6168 work 702-653-3050. Just let me know what you need.



Barb:flower: :bouncy: :flower:

[Babs RN]

Andrea,
Here are my answers to the second batch...my box is empty too...
1)I have no clue what caused my endo...
2)I have been on Depo-Lupron twice and Depo Provera twice. Biggest side effect was vaginal dryness with the Lupron, diarrhea on the Lupron, and increased pain on the Lupron.
4) Menopause at 32 due to the hysterectomy, cannot bear more children, infertility. Had wound infection with right ovary removal in 99 and had allergic reaction to staples after hysterectomy. Had CVA(stroke ) after hysterectomy at age 32
5)Nope--I'm the lucky winner.
6)Was diagnosed after my TAH--not sure.


Barb

[1tuffcookie]

Thanks to everyone who's still answering! :) Here are some more questions:

1. Please describe your IC pain.
2. Please describe your endo pain. Is it different from IC pain? How?
3. Besides pain, have you had any other symptoms from endo?
4. Have your family and friends been supportive of your battles with endo and IC? How about of any other health problems?
5. When were you diagnosed with IC, and how many doctors did you see before your diagnosis?
6. When you've had cystoscopy(ies) did the doctor see Hunner's ulcers or pinpoint hemorrhages?
7. What treatments have you tried for IC, and how did they work?
8. What side effects have you had from IC treatments?

[HillaryD]

1. Please describe your IC pain.
The pain I get from my IC is in and around my bladder. It is usually feels like a lot of pressure and a dull ache. I also get pain in my vulva & urethral area which is awful. It sometimes feels like I have stabbing pains, sometimes it's tender, sometimes it feels like I'm being stretched, it is always different. I do occasionally have burning with and without urination. Sex is impossible.

2. Please describe your endo pain. Is it different from IC pain? How?
My Endo pain is different from my IC pain. My endo pain is sometimes on my ovaries and it usually feels like my ovaries are going to pop. The most common endo pain that I have is the pain on the lower right side of my abdomen that shoots down my legs. I am actually starting to wonder if that pain is coming from the IC as well, because it has gotten worse ever since my other IC symptoms started. I also always have a low back ache and am tender in my glutes sometimes. Sex is impossible because of the endo as well.

3. Besides pain, have you had any other symptoms from endo?
I have had difficulty getting pregnant.

4. Have your family and friends been supportive of your battles with endo and IC? How about of any other health problems?
My family and friends have been supportive about my endo, but aren't very understanding with my IC. My husband is extremely understanding of both, but I have struggled with my Mom, and Mother-in-Law understanding my IC battles.

5. When were you diagnosed with IC, and how many doctors did you see before your diagnosis?
I was diagnosed with IC in March of 2004. I first saw my Gyneocologist in December of 2003 with what I thought was pain from my endo after my laparoscopy in October of 2003, and she said that she thought it was IC and sent me to a Urologist. I have only seen one Urologist with my IC.

6. When you've had cystoscopy(ies) did the doctor see Hunner's ulcers or pinpoint hemorrhages?
He pinpointed hemorrhages and saw small ulcers

7. What treatments have you tried for IC, and how did they work?
I have been put on Elmiron, Hydroxyzine, Paxil Cr and Neurontin (which is mostly for my Vulvodynia). I have only been on the medications for about a month and a half, but I have seen slight progress.

8. What side effects have you had from IC treatments?
My skin has been very dry, which I assume is from the Hydroxyzine. I am more tired as usual, and the Neurontin is making me gain weight and I am constantly bloated.

[holles]

1. Please describe your IC pain.
IC pain is like a shocking feeling in my bladder. it's hard to describe. but when i have the pain, it's the only thing i can think about because it's so bad. it's like extremely painful gas only it's in my bladder. it hurts to breathe, wear a seatbelt, walk upright (end up hunching over). sometimes i'll have urgency that's pretty bad. sometimes i'll have incontinence (rare though). sometimes burning in the genital area. but usually just a horrible feeling in the bladder.

2. Please describe your endo pain. Is it different from IC pain? How?
my endo pain consists of cramps (although not that painful since the second surgery), tailbone pain, deep pain during intercourse, pain on the lower right side (think it's the ovary, but i'm not sure), buttock pain, vaginal pain during my period, pain when sitting or lying down

3. Besides pain, have you had any other symptoms from endo?
other symptoms were nausea with periods, diarrhea with periods, sometimes passing out from the pain, very heavy bleeding, 8 years of infertility (but the endo is early stage, go figure, huh?)

4. Have your family and friends been supportive of your battles with endo and IC? How about of any other health problems?
my mom was always supportive about the pain. she had it too. but was never dx with endo. she was concerned about me years ago and relieved when i finally got a dx in 2002.

my husband has been my rock this whole time. he's more sympathetic about the IC pain than the endo pain. i think it's because he had a kidney injury in high school and can sort of relate to the pain i have. the endo pain leaves him confused. mainly because he doesn't have the same parts i do. he tries to be sympathetic, but it's hard for him. the good thing is he does try.

my friends are getting better. with endo, it's sort of a taboo topic with them. but the infertility problems have them concerned. and they can tell when i'm flaring with the IC. i guess my face is an open book. or they notice because i'm in the bathroom all the time. :rolleyes:

i'm really trying to just keep mum a lot of the time now. if someone notices and asks about it, i'll tell them if i'm having a problem, but i am trying not to say too much about it.

5. When were you diagnosed with IC, and how many doctors did you see before your diagnosis?
was dx in june 2003 during a laparoscopy/cystoscopy for recurrent endometriosis and pelvic pain. only saw my gyn a couple times (in about 2 months) before he referred me to a urologist. they did the surgical procedures together. the urologist referred me to another urologist who specializes in IC.

6. When you've had cystoscopy(ies) did the doctor see Hunner's ulcers or pinpoint hemorrhages?
i don't know what they saw.

7. What treatments have you tried for IC, and how did they work?
was using the IC diet for a very long time. unfortunately, it's not working anymore. so i've resorted to elmiron (hasn't had time to work yet) and taking urelle when i flare. after the cystoscopy, i was having a lot of problems with spasms, so i used belladonna/opium suppositories 2 or 3 times. do not like the b&o things. they caused horrible nightmares. although i was able to sit up for the first time in 3 days.

8. What side effects have you had from IC treatments?
just the nightmares from the b&o suppositories. elmiron caused lots of diarrhea at first. and blue urine from urelle, but that's actually kind of interesting. lol.

[Mimi-in-Chicagoland]

I haven't been on the board for a while, but I'll help out too. :)

1. 12
2. At first my periods weren't bad. They did get worse, and I had ovarian cysts at different times during my cycle. The cramps did get worse, especially after the IC.
3. 5 or 6. I had a laparascopy because they thought that not all of my pain was from the IC...
4. Oh yes. I was told that about my IC pain, endo pain, and heart stuff. Well, I have IC, I have endo, and I had two strokes and a TIA because I had a hole in my heart that those stupid doctors didn't find. It wasn't in my head, now, was is?? (well, the dead cells are now.)
5. The endo was on my bowels, bladder and under my uterus.
6. Cauterizing laser. I didn't know that you were supposed to dig it out....although I would not want them to dig anything out of my bladder.
7. Not yet.


1. I think its autoimmunal. In my case, my mother was on those nasty 70's birth control pills for 4 months before she realized she was pregnant. I also think an injury that broke my tailbone and compressed my lumbar contributed.
2. Depo-provera and nuva-ring with skipping periods (under doctor supervision) Those worked very well, and I would have continued if I could have.
3. I don't like the wrinkly scar on my bellybutton. :rolleyes: I gained a lot of weight on depo-provera.
4. I have mitral valve prolapse. (I just got checked again...and its there.) I think they're connected--at least that what the research has said. I also have Fibrocystic breast.
5. My half sister suspects she has endo and I have an aunt with fibromyalgia...(I do have a few symptoms of fibro)
6. In the past, yes. My interstim takes care of most of my bladder problems, but I do flare a bit during my period. My endo flares horrible one week before my period and one week after...as does the fibrocystic breast.

1. Before interstim--horrible spasms. Remember the priest in Indiana Jones and the Temple of Doom who removes the guy's heart? I felt like someone was reaching in and grabbing my bladder and squeezing it. It hurt horribly before and after voiding. I also had aching and burning "flare" pain. All the spasms are gone after the interstim. The only time I have pain is around my period, or if I eat food that I shouldn't.
2. Endo pain feels sort of like menstral cramping--except its more on the surface of my abdomen instead of deep in my back and deep down. A lot of times its on one side...for me it feels like my ovary. At times it feels like I'm being stabbed. A heating pad does help.
3. Constipation and diarrhea during periods.
4. My husband and parents have been supportive, as has my in-laws to some extent. My friends, some yes, some no. People just don't understand. They say really stupid stuff like "Why aren't you better yet?" or "You just have to live your life anyway." I wish you could give these diseases to people for just a day...empathy would really rise. As for other conditions, Stroke is up there with heart attack and cancer, so I lucked out on that one.:rolleyes:
5. 4 My PCP said she though I had IC and sent me to the uro department in her system. It was taking so long to get an appointment, I tried to find someone and wound up with the world's worst uro. I made him do the hydo/potassium test. The day of the test he said he didn't know why he was doing it...I didn't have IC. Afterwards, he said I did have IC, but he didn't want to do anything about it. I found another doctor.
6. The photo looks like the world's worst bloodshot eye...no ulcer
My next doctor did say my IC was really bad
7. Ditropan (didn't work)Elmiron (tried it twice, didn't work) Valium, (found out I'm deathly allergic) Diet (didn't really help that much--except for tomato, cranberry and citrus) Elavil, (helped a little bit) Interstim (I'm almost normal now)
8. Horrible weight gain

[1tuffcookie]

I think this will be the last batch of questions.

1. How have endo and IC changed your life?
2. How have you changed as a person due to these diseases?
3. What has been the worst thing about having endo?
4. What has been the worst thing about having IC?
5. Do you think your doctor(s) really understand what you go through?
6. What advice would you give to women who are struggling with endo and IC?

Thank you! Be well.:hi:

[Babs RN]

Andrea,
I will answer rounds 3 and 4 of your questions tomorrow from work. The computer is faster and today was my first day back after the last 3 weeks of misery so I'm kinda wiped.


TTFN,
Barb

[holles]

1. How have endo and IC changed your life?
endo has changed my life a lot. it's destroyed my fertility and femininity. i feel defective now. IC has changed my life because i now have to think a lot about what i eat or drink. stress triggers flares and pain. medicines trigger flares. travel (eating strange food) triggers flares. when i have a flare, the only thing i can even think about is my bladder, and that's the last thing i want to think about. :rolleyes:

2. How have you changed as a person due to these diseases?
i'm definitely more cynical. i am angry, hurt, depressed. i avoid babies and families because i want a child so desperately, yet i can't conceive. my relationships with my friends is strained. they don't understand how i can be in so much pain sometimes. my relationship with my husband has grown though. i know that sometimes he resents the pain, but he always stays by me. sometimes it's hard, but he's never given up on me. i think the infertility factor is the hardest to deal with. in the 8 years we've been trying, i've definitely gone through some bad times. but i always learn and grow. i've definitely developed some wisdom along the way.

3. What has been the worst thing about having endo?
infertility; it's a life-altering experience, and sometimes there is no resolution

4. What has been the worst thing about having IC?
having to change my diet. i'm a very picky eater, and now i feel like i'm starving.

5. Do you think your doctor(s) really understand what you go through?
i don't know. my gyn is very sympathetic. his wife is a urologist, so i have a feeling he asks her a lot of questions about IC. he always asks me how my bladder is doing. lol.

6. What advice would you give to women who are struggling with endo and IC?
find a doctor who has a brain and a heart. get educated as much as you can about both. i did make the mistake of reading too much though and started self-diagnosing. :rolleyes: try to avoid that. ;) be careful with the treatments you choose. some treatments for endo can cause problems with the bladder. make sure your doctors communicate with each other.

[1tuffcookie]

I can't think of any more general questions, but I may ask a few individual questions through PMs. I want to thank you all again for being so honest, open, and thorough. Thank you for giving of yourselves--for baring your souls to help strangers. I am especially impressed with answers to the last group of questions; wisdom came shining through! May God bless you for your kindness.:kiss:

[carla_2004]

For those of us who wish to answer through pm, your pm is now full.

I'll try it again tomorrow.

Hugs from Carla:kiss:

[Katrina]

I want to wish you the best of luck in your article. I hope it goes very well for you. I am proud already!:D :D

[1tuffcookie]

Carla, thanks for telling me. I cleaned my box, so it should be OK now. Katrina, thanks for the support! :)

[Julie Smith]

would love to assist in any way possible. have both, just let me know what you need. julie