Mamas with Endometriosis thread

[Jacksmum8]

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~

[Jacksmum8]

Where are all my endo mamas?

[MaddieMay]

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.

[Jacksmum8]

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!

[Darya]

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.
Darya

[Jacksmum8]

Welcome Darya!

[momtoalexsarah]

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.

[miasmommy]

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!

[Jacksmum8]

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.:

[elf]

New Pain Meds

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?

[miasmommy]

Nice to meet you all...


Good Luck to those TTC.... I still can't believe I am finally a mommy, hang in there!

[Jacksmum8]

Originally Posted by elf

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.

[MommyHawk]

endo since 15yo

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.

[MaddieMay]

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.

[Aura_Kitten]

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

[Miguelsmomma]

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.

[vermontgirl]

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.

[Starr]

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?

[Jacksmum8]

Originally Posted by Miguelsmomma

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.

[Jacksmum8]

Originally Posted by Starr

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!