Mamas with Endometriosis thread - Mothering Forums

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#1 of 62 Old 10-13-2007, 12:31 AM - Thread Starter
 
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Hi all,

I wanted to start a thread for moms who are coping with endometriosis (women who are not yet mamas with endo are certainly welcome as well )

I know we have talked about different treatments and therapies in the past but I really felt the need for a thread to be just about endo and how one copes with this disease.

Note: this is not a thread for debates about different treatment options, all women with endo deal with different symptoms and relief methods and I hope we can all be respectful about everyones choices. As women with Endometriosis we all know how painful and devastating this particular disease is and I want to create a safe environment for everyone to receive support and information. I'm hoping this will become a great little endo support community

~Blessings to all~


 
 

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#2 of 62 Old 10-13-2007, 10:29 PM - Thread Starter
 
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Where are all my endo mamas?


 
 

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#3 of 62 Old 10-14-2007, 12:29 AM
 
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We've been TTC #1 for over a year-for about the same amount of time I've been officially diagnosed with endo, although the symptoms had been present for years.

It's been an intense journey. I'm very blessed to have a lot of support, but at the same time I don't think anyone really understands. I'm sure others with endo can relate.

A supportive military wife and mama to my busy boy and sweet girl.
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#4 of 62 Old 10-14-2007, 12:47 AM - Thread Starter
 
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Hi Nicole!

Yes, it's hard for people who don't have endo to really understand what you go through on a day to day month to month basis. It's funny but since being diagnosed in 1999, I've never gotten used to having the disease but everyone else in my family has, which is weird for me. If I complain I'm having a bad month or I'm in pain they're all like "well don't you have some kind of drugs to manage that?" Like I should be fine since I now know what my problem is. Or my personal favorite is "well at least it's not cancer" um...ok:

Welcome to the thread!


 
 

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#5 of 62 Old 10-14-2007, 03:39 AM
 
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Coming out of lurkdom.....I'm not a mama but have endo. I was diagnosed about 3.5 years ago, finally. I really do agree about people not understanding what it is really like. It seems that a lot of people, if they think of endo at all, think of it as "bad cramps." I've had a few good years on my med management but still have bad months every now and again. I dread and fear ever ttc as I would have to go off of my meds and still have no guarantee of success.
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#6 of 62 Old 10-15-2007, 01:54 AM - Thread Starter
 
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Welcome Darya!


 
 

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#7 of 62 Old 10-15-2007, 10:21 AM
 
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I have been dealing with Endo for 15 years now and if have been quite the rollercoaster ride.
When I was 15 I was put on BC pills to manage it and they worked well, untill we tried to TTC then it went down hill, I was in pain and dealing with wacked out hormones for nearly 4 years untill we finaly got a BFP with my son. I have one blocked tube and also have PCOS so I was on clomid for that.
My son was born by crash c/s but I have a great OB that I really do love she removed as much of the scar tissue as she could durring the c/s. Unfortunatly she said that we had no chance of TTC on our own becuase of the endo damage.
After DS was born my cycle came back at 8 weeks old, and because we had been told that there was no chance of getting pregnant we didn't use any BC. Well I got pregnant when DS was 4 months old. After attempting VBAC I ended up with another c/s and again my OB "cleaned up" and scar tissue and told us that if we wnated any more children that we should start TTC when DD was about 9 months old. We decided that we wanted one more so we TTC at 9 months and concived on the first try.
I had my tubes tied when DD was born because I didn't want to risk addtional scar tissue from anymore c/s (that and we are happy with 3).
Thankfully when I was BFing the endo was not near as bad, unfornatly my youngest has weaned(not by my choice) and the last 2 cycles have been bad and I am considering BC pills again.
Do any of you get "tummy troubles" with your cycles, For the week before and the first 3-4 days of my period I get bad diareaha and then as soon as my flow stops I get constipated - this part drives me crazy. There are also certain times in my cycle that I feel nausouse - as bad as morning sickness.
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#8 of 62 Old 10-15-2007, 09:13 PM
 
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Hi!

I've had endo & and have a 3 yr. old daughter. I am currently on the pill ( Yasmin) to control my symptoms. I am 42 and not planning on having any more children. I am not crazy about being on the pill but do not want to have anymore surgery so for now, its working.

Yes, I had lots of GI problems ( vomiting, etc.) during my menses & severe pain during ovulation.


I've tried lots of holistic remedies, in addition to surgery & medication. Its an awful disease!


Good Luck Everyone- be well!
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#9 of 62 Old 10-15-2007, 09:54 PM - Thread Starter
 
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I have GI problems as well. Right before I was admitted into the hospital for emergency surgery for endo (which I didn't know was endo at the time) I was scheduled to see a GI specialist because I had so many bowel problems. I was convinced I had colon cancer because I was passing so much blood. Turns out I had Endo which had gone through my colon. I still have a very bad tummy at ovulation time as well as with my period. Yes it is an awful disease.:


 
 

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#10 of 62 Old 10-16-2007, 01:00 AM
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I have battled endo since my very first period (18 years now). I have had 2 laps and frequent visits to the ER. Birth control pills definately helped.

We have been TTC for 2+ years. We have tried clomid, FSH injections and IUI---still no ovulation.

My periods are increasing in pain over the last year. I almost went to the ER last month.

I usually take Anaprox and Darvocet for pain. My doctor just switched me over to Celebrex, Vicodin, and Flexeril (muscle relaxer). We'll see how this month goes.

What works for you girls?
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#11 of 62 Old 10-16-2007, 08:07 AM
 
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Nice to meet you all...


Good Luck to those TTC.... I still can't believe I am finally a mommy, hang in there!
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#12 of 62 Old 10-16-2007, 01:36 PM - Thread Starter
 
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I have battled endo since my very first period (18 years now). I have had 2 laps and frequent visits to the ER. Birth control pills definately helped.

We have been TTC for 2+ years. We have tried clomid, FSH injections and IUI---still no ovulation.

My periods are increasing in pain over the last year. I almost went to the ER last month.

I usually take Anaprox and Darvocet for pain. My doctor just switched me over to Celebrex, Vicodin, and Flexeril (muscle relaxer). We'll see how this month goes.

What works for you girls?
Pain meds....since having my son naproxen works pretty well for me, although nothing works on the first day. I'm trying some new holistic treatments as well as gentle exercise and diet changes. Staying away from caffeine, alcohol and refined sugar really makes a difference three days before my period starts. Vigorous exercices also make things worse, light stretching helps with scar tissue.


 
 

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#13 of 62 Old 10-16-2007, 08:23 PM
 
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I started having symptoms when I was 15 but wasn't 'officially' diagnosed via laporoscopy until I was 19. I never felt 'better' until after I had DS 4 years ago and then the endo came back about 6 months after my menses returned (when DS was 13mo thanks to BF ) I had a HARD time getting pregnant the first time, but DD was an opps never thought I'd have one of those! She's 17mo, still nursing, and the endo, I think, is still in remission (I don't think it ever really goes away - a friend's mom had a hysterectomy and 8 months later it came back in her abdominal cavity...she was a mess after that, let life go) But I hope to keep mine at bay for as long as possible!

Actually I feel that it is sort of 'cured' since I got pregnant with DS. The first 4 months of pregnancy were horribly painful as the growing baby moved and broke all the adhesions inside - oh, that was terrible! But I feel that the pregnancy kind of obliterated the endo It hasn't come back as bad, or even bad enough to mention. I still have a constant ovarian pain that ultrasounds pick up nothing, but it feels like endo, but only in one spot...after 13 years of agonizing pain all month, all over, I'm ok with one spot!

I'm just so very thankful for my DH. If it wasn't for him, I don't think I'd ever have sex. I see all these shows on TV with women hooking up and yeah, it seems like it would be fun for a night, but I always know that that would never be me. I wouldn't be able to trust a total stranger to be gentle, to slow down, or stop if it was too painful. My DH, bless him, probably hasn't had sex like other men, you know, all over the house, crazy hard, in all sorts of positions. The endo just doesn't allow for freedom in that arena at all! That is what I think I hate the most. It limits me in how I want to be with my hubby... I can deal with the pain for myself, but to effect him, I feel sorry for him and guilty all the time...

anyway, I feel extremely lucky to have had 2 kids after being told I'd NEVER have kids (when I was 19 I was told that)... at 28 I did! and now I'm interested in being a surrogate mother since I know how depressing it can be to not be able to. I was blessed, I want to bless someone else.
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#14 of 62 Old 10-18-2007, 11:28 PM
 
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I have GI problems too. The endo has pretty much fused together the lower part of my cervix and my colon. Ick. I had a colonoscopy done and luckily the endo has not perforated the wall of the colon. However, in the pictures they gave me you can clearly see where the endo is-my colon looks smooshed.

My stomach feels horrible much of the time-like someone stabbed me with a knife and is twisting the knife. No pain meds can touch that pain, but Lortab can sometimes take the edge off. Celebrex helps with the nerve pain when I need it. (I believe the endo has grown on a nerve in my right leg.) I try to take prescription meds only when I really need them.

A supportive military wife and mama to my busy boy and sweet girl.
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#15 of 62 Old 10-19-2007, 12:44 AM
 
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I'm so happy we finally have a living, breathing endo thread here. I tried a few times to get one started and apparently there weren't enough people, or nobody ever noticed it. :


Anyhow.... Hi! I have endo as well. I was actually just about to post about rectal bleeding as well - I didn't realize that this could be being caused by my endometriosis, too, although I have had other GI problems from my endo before.

to all
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#16 of 62 Old 10-23-2007, 01:50 PM
 
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Hi. I am also glad that this thread was started. I was diagnosed with endo in March of '05, but I believe I have had it for many, many years. We have now officially been ttc for five years. We have gotten pregnant three times and have lost every single baby. It took a year and a half to get pregnant the first time, only to lose it at about eight weeks. Another two years went by after that before getting pregnant, getting all the way to 18 weeks and losing him. No one can tell us why he died. Then I read Endometriosis: A key to healing and fertility through nutrition. I followed the nutrition program for a month to a month and a half and got pregnant -- only to lose it at 6-7 weeks. That was last November, and I am still not able to get back on the diet and do what I need to do to help my symptoms and infertility.

I do have a lot of pain, but not enough to take all of the painkillers that some of you do, thankfully. I have been with DH for 12 years. I was 17 when we started going out, and when we started having sex, sometimes afterward I would cry because it would hurt inside so much. I eventually stopped having that particular pain, but on Saturday when we DTD, I all of a sudden had it again. I haven't been in that much pain from sex in 12 years. It was awful! This disease has taken a terrible toll on my life and marriage.

PS, what does TCM mean? I read it on another thread when someone was talking about acupuncture and chinese herbs.
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#17 of 62 Old 10-23-2007, 04:46 PM
 
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Hello everyone! I definitely belong here.

I was diagnosed with endometriosis 2 years ago when I finally had laparoscopy. My doctor told me I had a pretty severe case and that I had under 5 years at most to have children. My husband and I had only been married for a few months but we decided to jump to it. We were pregnant one month later. It is strange that it worked so quick and I am so thankful. We would like to try to have one more child at some point. Harvest is 15 months now. Hopefully it will be easy the second time as well.

Basically what I have trouble coping with is the immense pain I feel during my periods because of endometriosis. What led me to finally have laparoscopy was the fact that I was crippled by my pain and heavy bleeding every month. I couldnt function. It was terrible. Also pain during intercourse was frustrating. So far I am still not back into the swing of things since having Harvest but I fear the pain to come back. I am mostly scared of having surgery to have my female parts removed. I really just want to live a normal life.

Living the Joyful life as a mama of three beautiful children who are just right the way they are.

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#18 of 62 Old 10-23-2007, 04:59 PM
 
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Well I definetly fit here. I was diagnosed with endo when I was 14, basically when they removed my appendix there was endo tissue all over it. So I went on BCP to help with the symptoms, which me and my mom could not figure out why they were so bad until then. I was on BCP until I was married when I went off and we unofficially were TTC. Symptoms came back again, even more brutal and added onto that I started developing ovarian cysts. So when my period comes around I have days of vomiting, nausea, severe cramps... you name it.

We are now TTC again and actually meet with a Dr. next week to discuss a laparoscopy, right now she thinks I have endo as well as PCOS oh and my uterus is bicorneate as well :. So we will see where that gets us. Did anyones symptoms get better after having children?
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#19 of 62 Old 10-23-2007, 09:51 PM - Thread Starter
 
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Hi. I am also glad that this thread was started. I was diagnosed with endo in March of '05, but I believe I have had it for many, many years. We have now officially been ttc for five years. We have gotten pregnant three times and have lost every single baby. It took a year and a half to get pregnant the first time, only to lose it at about eight weeks. Another two years went by after that before getting pregnant, getting all the way to 18 weeks and losing him. No one can tell us why he died. Then I read Endometriosis: A key to healing and fertility through nutrition. I followed the nutrition program for a month to a month and a half and got pregnant -- only to lose it at 6-7 weeks. That was last November, and I am still not able to get back on the diet and do what I need to do to help my symptoms and infertility.

I do have a lot of pain, but not enough to take all of the painkillers that some of you do, thankfully. I have been with DH for 12 years. I was 17 when we started going out, and when we started having sex, sometimes afterward I would cry because it would hurt inside so much. I eventually stopped having that particular pain, but on Saturday when we DTD, I all of a sudden had it again. I haven't been in that much pain from sex in 12 years. It was awful! This disease has taken a terrible toll on my life and marriage.

PS, what does TCM mean? I read it on another thread when someone was talking about acupuncture and chinese herbs.
TCM stands for traditional chinese medicine. It helped me a great deal when dealing with symptoms.


 
 

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#20 of 62 Old 10-23-2007, 09:54 PM - Thread Starter
 
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Did anyones symptoms get better after having children?
Yes, mine improved quite a bit, but i think alot of that had to do with extended breastfeeding. Your body produces more progesterone while pregnant and nursing and it balances out the estrogen, which most naturopaths think people with endometriosis have too much of.

I'm so happy to have tihs thread take off! It's wonderful to have a support network when dealing with this disease. Welcome everyone!


 
 

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#21 of 62 Old 10-23-2007, 10:56 PM
 
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Great to meet you all!

Do any of you have daughters? I am so afraid that my daughter will have endometriosis when she is older. The good thing is I will tell her about it, I think I went for way too long before getting diagnosed.

Yes, my symptoms improved , though briefly, after having my daughter- I had no symptoms during breastfeeding & then probably got another year of pretty "normal" periods. Eventually the pain returned & I got myself on birth control pills. For me, it was often more painful during ovulation & then up until I got my period- a left sided "twisting" kind of pain- I even had ultrasounds & they were negative. I think I may have endo on my ligament or some scar tissue from my previous laparascopy.

In the past, I did find relief with a massage, acupuncture & Naprosyn. Red Raspberry Leaf tea was helpful too.


Best to all,
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#22 of 62 Old 10-23-2007, 11:00 PM
 
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i'm so excited i found this thread! i've had endo for 10 yrs and it's been in remission since i've had babes. living with it was horror before we had them. there was NO knowledge and i didn't know anybody that had it and dr's were just figuring out what it was. i am so happy to have found you all!
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#23 of 62 Old 10-23-2007, 11:13 PM
 
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Great to meet you all!

Do any of you have daughters? I am so afraid that my daughter will have endometriosis when she is older.
can i double post? i'm so excited i've been reading the whole thread!

i have dd 5...it never occurred to me that she could get it until now. my mil also had it and was onle able to carry one child full term..my dh. in a way, it scares me, but she'll be better prepared and we'll be better able to care for her if and when the time comes. i'd love to share my whole story, but it's a long one and i don't really have the time at the moment...nursing my babe to sleep...my personal endo fighter!
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#24 of 62 Old 10-24-2007, 12:27 AM
 
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Well, I'm one of the rare mamas for whom pregnancy and breastfeeding actually made the endometriosis WORSE. I didn't even know this was a possibility until I got pregnant, and the pain was just... horrible. Worse than I could have imagined it. To where, the baby would kick, and it would literally make me collapse in pain.

I had surgical treatment for the endo just about a year and a half ago and already the pain levels are bad enough that I'm back on serious painkillers (thank God for those, and that I had enough money from financial aid to pay for them since my insurance doesn't cover it).


I'm going back to see my ob/gyn for it, and a general check-up, tomorrow. Wish me luck..... I don't know what my options are, but at this point I'm almost ready to go on the Lupron (early menopause, hooray). :
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#25 of 62 Old 10-24-2007, 01:45 AM - Thread Starter
 
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Well, I'm one of the rare mamas for whom pregnancy and breastfeeding actually made the endometriosis WORSE. I didn't even know this was a possibility until I got pregnant, and the pain was just... horrible. Worse than I could have imagined it. To where, the baby would kick, and it would literally make me collapse in pain.

I had surgical treatment for the endo just about a year and a half ago and already the pain levels are bad enough that I'm back on serious painkillers (thank God for those, and that I had enough money from financial aid to pay for them since my insurance doesn't cover it).


I'm going back to see my ob/gyn for it, and a general check-up, tomorrow. Wish me luck..... I don't know what my options are, but at this point I'm almost ready to go on the Lupron (early menopause, hooray). :

Yes, I think that is the problem with detecting Endo, symptoms are so different for every women. Hugs to you, you are amazing for getting through the pregnancy


 
 

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#26 of 62 Old 10-24-2007, 04:41 PM
 
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Endo is really mysterious- I had very fine scattered specks of it & really severe symptoms- My GYN told me she sometimes sees huge amounts of it during a laparocopy & the patient may not even have any symptoms.


Is anyone here a member of the Endometriosis Association? I was many years ago.
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#27 of 62 Old 10-24-2007, 11:15 PM
 
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I'm not a member.


I agree ~ it can be very odd.

I went back to see my old dr today ~ a wonderfully sweet man who Totally Gets It as far as endo is concerned ~ because he now works at a clinic that takes medi-cal ...... however the treatments for endo are not covered by medi-cal.

So.... yeah...... that totally sucks.........
I was both so touched by his wonderfulness (caring, sweet, takes the time to answer questions and listen honestly, not to mention knowing my history and understanding who I am and what I believe in, and etc etc etc).... and also so upset by the fact that I can't get treatment for my endo unless I paid out of pocket.... I was near tears when I left his office. I stood in KFC for fifteen minutes fighting back tears while my kids waited outside with their grandpa, so they wouldn't have to see me crying.

Anyway ..... phew that's depressing...... sorry. :
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#28 of 62 Old 10-25-2007, 04:07 PM - Thread Starter
 
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I'm not a member.


I agree ~ it can be very odd.

I went back to see my old dr today ~ a wonderfully sweet man who Totally Gets It as far as endo is concerned ~ because he now works at a clinic that takes medi-cal ...... however the treatments for endo are not covered by medi-cal.

So.... yeah...... that totally sucks.........
I was both so touched by his wonderfulness (caring, sweet, takes the time to answer questions and listen honestly, not to mention knowing my history and understanding who I am and what I believe in, and etc etc etc).... and also so upset by the fact that I can't get treatment for my endo unless I paid out of pocket.... I was near tears when I left his office. I stood in KFC for fifteen minutes fighting back tears while my kids waited outside with their grandpa, so they wouldn't have to see me crying.

Anyway ..... phew that's depressing...... sorry. :
So sorry you had to go through that

I too only find relief from symptoms that cost alot of money that has to come from my own pocket. Diet change is a big one, and having a pestiside, hormone free whole grain diet is expensive. I don't do well on a vegetarian diet either, I just feel very bloated and sick and I can't have any congestion in the midsection or my symptoms get worse. Some days I just wish I didn't have to negotiate through all this crap.


 
 

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#29 of 62 Old 10-31-2007, 12:43 PM
 
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Originally Posted by Aura_Kitten View Post
I'm going back to see my ob/gyn for it, and a general check-up, tomorrow. Wish me luck..... I don't know what my options are, but at this point I'm almost ready to go on the Lupron (early menopause, hooray). :
Even though I said I never would go on Lupron (I probably have several threads stating such on here), I did it. : While I'd been doing things naturally for the past year, my endo just got worse and worse. It was to the point where it was really affecting my quality of life. I reached a breaking point and did it. I am halfway through treatment and my only side effect has been hot flashes. I feel better than I have in years. I am doing the lowest dose available, once a month. My shots are a little over $600/month, which thankfully insurance covers. I still firmly believe that doctors should not be prescribing Lupron as freely as they do and I think people really need to weigh the pros and cons. The side effects can be serious and people also need to be closely monitored. It's not the answer for everyone, but it can be for some. Please no flames to those who are reading this. If anyone has any questions, let me know and I'd be glad to answer them.

A supportive military wife and mama to my busy boy and sweet girl.
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#30 of 62 Old 10-31-2007, 03:30 PM
 
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Originally Posted by miasmommy View Post
Great to meet you all!

Do any of you have daughters? I am so afraid that my daughter will have endometriosis when she is older.
As of now I have a baby son and no daughtors but I do think about this. If I have a girl I will try my hardest for her to have a healthy start. I would only put organic cotton diapers and underpants on her. When she gets older she will use organic tampons and cloth pads. I would make sure she eats a very balanced diet of organic whole foods-especially vegetables. I am glad we live in the middle of nowhere in Vermont where the air is so clean.

Good luck with your daughtors. Try to keep their environment clean and toxic free.

Living the Joyful life as a mama of three beautiful children who are just right the way they are.

I blog at www.saboss.blogspot.com chicken3.gif

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