Endo Sufferers!

[dinky]

hello everyone! i thought i would start a thread for women who suffer from the horrific disease endometriosis, because i dont think there is enough support for women who suffer from this disease in the outside world. i was thinking that maybe we could come together in this thread and discuss our situations and offer advice or just vent here so that we can provide support for other women aswel as ourselves. this disease can be difficult to cope with expecially when it affects your fertility, not many people can relate to the damage it can cause to someones life.

ok so ill start with me, ive been ttc for 2.5 years now with no luck. ive had 6 rounds of failed clomid, a hsg which showed fully open patent tubes, bloodtests which were normal, been tested for std's and infections which came back clear and im currently waiting for a laparascopy so i can be diagnosed with endometriosis. my gyno thinks i have this because i am ovulating normally, have regular cycles, have never concieved a child, extremely painful period cramps, backache, bleed during bowel movements whilst on my period, have ibs symptoms and bloating. the only way this can be diagnosed as you know is through lap so cant wait to get it done!

so whats your stories then? what stage have you been diagnosed with? what tests have you had? what treatment you had? how long have you been ttc? will it be your 1st child? ect.

im looking forward to gaining team members and friends though this thread! and i look forward to hearing your stories!

 

[dinky]

ok so am i right in guessing that theres no one else using this website that is ttc and suffering from endometriosis? i must be the only 1!!! lucky me.

 

[dinky]

thanks for the support

 

[LadyBee]

Hey! I must join you! I have been careful using BnB lately because I have house guests.

You're not alone!!!! In fact I've even friended other sufferers that I'm going to make aware of this thread.

I have had severe endo for about 10 years and was finally diagnosed with stage 3 endo December of 07. I had an ultrasound to look for other issues as well and I had a polyp at the entrance of my uterus and 2 medium sized cysts on my ovaries. I scheduled my lap, hyst and dye for Feb. 2nd 08. Tubes were clear and cysts were removed. I had a lot of yellowing inside and many adhesions that were hardly able to be reached. She got what she could and informed me that if it got that bad again that I would have to look at my other options, for instance getting my "uterus removed" (those were her words, and oh my goodness what a shock that was!)
I attacked my disease from a natural angle. I am on supplements and didn't persue more medical intervention past the surgery. I wasn't interested in synthetic chemicals because I wanted my body to do the work.
We've been TTC for 6 years now (I hardly count the months anymore......) and the first 3 were very casual, contraception free. I knew something was wrong and didn't hold out much hope at the time. In more recent years I've been charting like a mad woman and BDing all the time (which, luckily we do anyway...hahaha). After my surgery we had a difficult time trying to decide if it was safe to get pregnant dispite the dr. telling us it was the prime time, we used condoms the month afterward. (people don't know this but the chances for miscarriage are great after an intense surgery like that-especially with the endo anyway and I wasn't ready to have the joy of a bfp and then to have it ripped from me)
As of late, I am on an incredible supplement that has changed my life and my endo dramatically. I've had 2 chemicals in the last 5 cycles and I believe the preseed is the cause for getting the egg and sperm to meet in the first place! I feel that with each week that passes my body is becoming more receptive to a pregnancy and I am more confident than ever that I can do this!!!
I'm not against medical treatment, but at 26, I feel there's time for that later, after I've exhausted the means to do this naturally.
Hubby and I have been married for 8 years and have been together for 9.5. He's 33 and healthy. (I was going to persue a SA for him but opted not to after the last chemical, I might change my mind, though in the future) Oh, and in February of this year I had an ultrasound to check my ovaries and there was a perfectly functional ovulation cyst!! I was thrilled and my dr. was impressed.

Ok, so that's my story I hope I'm not too much of a naturalistic freak for you.....

I wish all the best for you!!!

 

[Nicnac]

Hey there both!

Can I join too? I'm not quite diagnosed at the moment, but the Doc has fast tracked me past the ultrasounds and straight for the lap & dy, cause he's pretty convinced....and now I'm a bit scared!

I've been googling like a mad woman for the last two weeks, and the information is good...but it just doesn't seem to quite answer my questions. It'll be nice to have some buddies to chat to, about this.

My story, well, am 33 have just come back from a BnB break after cycle 21 failed in January. Whilst I was away, we still tried and tried.....but no luck. It was after developing a nasty pain in my groin, which worsened with the onset of AF which sent me off to the Docs. He knows I've been trying and talked about my lack of BFP's and excrutiating cramps, and he packed me off the hospital. They talked about my lack of BFP's, excrutiating cramps, bit more medical history, DF's little swimmers, and then examined me. At the end I got two blood appointments and a date for a lap and dye. Had CD3 bloods this morning and DF has SA on 16-2, then me back for CD21 bloods, then it's me again on the 11-6 for lap & dye.

I'm so scared they're going to open me up and tell me the worst. That it's stage 4 and a mess in there.

I have a question??? Do you girls get hot sweats around AF? I used to get a night of it just before the witch was due, but now they're happening on CD1 & 2...really quite bad. Hate being hot, and it's making sleeping unbearable. Is it just me?

I'm a bit a google nightmare at the best of times, but the thought of endo and hot sweats has sent me into a typing frenzy. I'm a big fan of herbal remedies andalternative therapies, and was thinking I might try something whilst waiting for L&D.....do you have any advise or suggestions?

Big

Nicnac

 

[oxSarahxo]

can i join please? have had endo for about 9 years now, and now had to have my right ovary removed due to it... im 20years old...

Had 1 daughter but she died shortly after birth in october 2008... have since had ovary removed and am trying again for my 2nd little one...

 

[Faerie]

I was finally diagnosed with endo in Jan 2004 via a laparascopy after having awful periods since the age of 12. I would pass out often and it made school really hard!

Someone asked about the hot sweat... erm, yeah, I got really bad hot sweats, not just when it was my period though, often throughout the cycle. First time my now DH witnessed an attack he wanted to take me to hospital and I had to explain what was going on, great for a 3rd date!

I had 3 early mc when we weren't trying, although it kinda gave me hope as a number of Drs had told me my chances of conceiving were slim. September 2006 when we decided to officially TTC I was put on a 3 month round of Zoladex, although being on Zoladex was really really tough it was amazing the difference afterwards, for the first time in my memory I felt like a "normal" person. I coupled the Zoladex with accupuncture which really helped.

I fell pregnant in the April but unfortunately mc at 12 weeks. Then 2 months later I had an ectopic pregnancy. They thought they'd managed to save the tube. A hsg in Jan 2008 showed my right tube to be totally blocked and I scheduled to have it removed in late April after my wedding. Never got that far because early April I collapsed, there was an infection in my tube, yuck! So it was removed.

My left ovary rarely ovulates and now I was left with a left fallopian tube and none on the right. As you can see though, in the August I fell pregnant again and now we're expecting our baby at the end of the month.

I am worried about what will happen when I'm not pregnant again, how severely the endometriosis will come back. Pregnancy has been a doddle compared to endo! I would definitely use accupuncture again for pain management, and if it comes to difficulty ttc no 2 would go back on Zoladex.

It's a bloody horrible condition and so little understood. Good luck with your ttc journeys girls and feel free to ask questions, I pretty much tried every treatment going...

 

[Nicnac]

First time my now DH witnessed an attack he wanted to take me to hospital and I had to explain what was going on, great for a 3rd date!

Just imagining the sheer terror on your DH's face made me smile....it must be a male thing....Panic straight to the hospital!!

As you can see though, in the August I fell pregnant again and now we're expecting our baby at the end of the month.

So so happy for you....hope all goes well in your final few weeks

 

[LadyBee]

Ladies! This is great!

Ok, I need to say what is working for me-
I'm sure we all have very similar things going on, yes, I used to get the hot sweats too....horrid! But in August I started to take Maca powder in conjunction with starting another thing called Immunocal. Ladies, this stuff is Amazing!!! It's expensive, but it is worth it!! Anyway, this is what it is-it's an immune booster. It helps your body create glutethione which is a master antioxidant...(and if you've done your research-and I know as endo chicks, we have!!) we are immune compromised and need to up our antioxidants!! Also, it helps with inflammation and low energy-PERFECT!

Ok, I'm really excited about this because of how much it's helped me. Pardon my enthusiasm but I have been dying to let lose this 'secret' to my BnB ladies who suffer like I have.

I would love to help you guys try it if you want so PM me and I'll get you more info if you're interested!

I have more to say but I don't want to sound preachy

I like this little group we're forming!

And hey, an awesome website that has helped me tons is-https://www.endo-resolved.com/index.html
Enjoy!

 

[LadyBee]

And Faerie, what an inspiration! Thank you and Congratulations!

 

[Eoz]

Hey! What a good time for this thread to pop up!

I am currently sat here recovering from an operation!

Well I have been a sufferer for about 15 years now.It has made my life so miserable and I have no quality of life.Do you know what pisses me off the most is the fact that you look healthy so people think you're faking it all.

I am lucky in a way.I do have 4 beautiful kids.Although they came at a struggle.I sadly lost 9 babies in 12 years.I suffer from severe backache,bloating,IBS,leg pain,headaches,heavy and long periods and mild depression.The op I am recovering from is due to Endometriosis.I collapsed in agony last weds (thread in general chatter) and was rushed in to surgery Friday.They removed a huge cyst and part of my tube.I am no longer able to have kids but unlike some i am so very blessed.I have tried everything going but still no avail.I could do with advice.

Bit of a short post but cant sit here to long. xxxx

 

[Faerie]

Hey! What a good time for this thread to pop up!

I am currently sat here recovering from an operation!

Well I have been a sufferer for about 15 years now.It has made my life so miserable and I have no quality of life.Do you know what pisses me off the most is the fact that you look healthy so people think you're faking it all.

I am lucky in a way.I do have 4 beautiful kids.Although they came at a struggle.I sadly lost 9 babies in 12 years.I suffer from severe backache,bloating,IBS,leg pain,headaches,heavy and long periods and mild depression.The op I am recovering from is due to Endometriosis.I collapsed in agony last weds (thread in general chatter) and was rushed in to surgery Friday.They removed a huge cyst and part of my tube.I am no longer able to have kids but unlike some i am so very blessed.I have tried everything going but still no avail.I could do with advice.

Bit of a short post but cant sit here to long. xxxx

HUGE darling, I didn't realise you'd been back in hospital.

I think the "looking fine" bit is the worst. I remember overhearing my ex boyfriend telling some friends that had come over that I was faking and attention seeking. Nice. Basically I'd gone to bed in agony and that was the sympathy I got!

 

[LadyBee]

Wow, I sure can relate to the faking it, I used to leave school and everyone who knew it was 'girly' stuff had no sympathy but I wished it was just 'girly' stuff!!! (then I'd go home and be so sick for days, cramping and throwing up, pretty much every symptom of endo all at once!
I am so sorry 4thbump, and when you have endo, it's not just about getting pregnant, it's about feeling good! I know people with endo that have had kids but it's like you said, when your quality of life isn't where it could be, you're miserable anyway.

 

[Nicnac]

Hey ladies


Meli: I've heard of the Maca, but not the Immunocal...how's it helped?
Faerie: Do you have any suggestions of what helped you?

Does anyone have IBS like symptoms? I've been getting trapped wind, acid reflux, constipation etc, but the reason I think it may be linked to the endo...is that I think I'm having trouble with my Pouch of Douglas....the bit between holes, er downstairs...and it's making any exits from that area quite difficult...unless prune or fibre assisted.

And this maybe way way way too much tmi....but this feels like the only place I can ask.......as I regular checker or CM & CP, I've noticed that, er, inside feels swollen. Not sore, But just more constricted than before. Does that make sense? sorry. Not that I'm sure DF would complain, but it feels like that area is shrinking a bit, or growing a bit..depends on how you look at it.
Help!


Big

 

[Faerie]

Hey ladies


Meli: I've heard of the Maca, but not the Immunocal...how's it helped?
Faerie: Do you have any suggestions of what helped you?

Does anyone have IBS like symptoms? I've been getting trapped wind, acid reflux, constipation etc, but the reason I think it may be linked to the endo...is that I think I'm having trouble with my Pouch of Douglas....the bit between holes, er downstairs...and it's making any exits from that area quite difficult...unless prune or fibre assisted.

And this maybe way way way too much tmi....but this feels like the only place I can ask.......as I regular checker or CM & CP, I've noticed that, er, inside feels swollen. Not sore, But just more constricted than before. Does that make sense? sorry. Not that I'm sure DF would complain, but it feels like that area is shrinking a bit, or growing a bit..depends on how you look at it.
Help!


Big

Hi Nicnac, I had a very swollen stomach almost looked like I was pregnant but I had the runs constantly rather than constipated. Anything I ate went straight through me. My gynae was convinced I had endo in my bowels. I stopped eating dairy, and although all the allergy tests said I wasn't allergic to it when I stopped eating it my problems went away.

The Zoladex really cleared up the endo, and although it is horrid (brings on a fake menopause to stop endo growing) it certainly seemed to do the trick. You can only go on it for short periods, as a method to "clear you" before ttc so unfortunately it's not a miracle cure.

I have found that accupuncture also really helped me.

 

[LadyBee]

Nicnac-Immunocal has helped me in so many ways! It wasn't an instant magical cure, nothing is...but over the few months taking it, I have increased energy and I also haven't had the issues during and before AF that I have had my whole time AFs prior. I used to get IBS type symptoms before and during Af, bloat, issues with emptying my bladder, and if there was a sickness going around, I would get it. I have had so many problems during AF I don't really know where to start with how I'm doing better! Those are the main ones, but I will say I was having the horrid bouts with acid reflux and horrible ulcerlike pains in my stomach. I have gone off of Ibuprofin because I developed a reaction to it due to the high amounts I was taking each month and now I only use 2-4 pamprin TOTAL during AF!!!
I clear out my uterus each month, not like before when I felt it just dragged on and I spotted before and after for days and days. I now start red and stop with very little brown spotting. I still have cramps but they are not nearly as horrible as before.
My hormones are more leveled, I'm not suffering the PMS I was before, I'm happy all the time, I don't feel the depression for 2 weeks per month, I SLEEP BETTER!

I don't want to sound like a commercial, but I want everyone to feel this way and not have to suffer!!!

Faerie, I haven't tried accupuncture. I love the testimonials though, I have heard of lots of ladies who have used it succesfully!

 

[Eoz]

I used the Zoladex and I loved it but the side effects were poo!I now take Ibroprofen 400mg and paracetomol every 4 hrs and going back to hospital in a few weeks to start a new action plan.I suffer from Ibs syptoms also.The thing I hate is the bloated belly.I have worked hard to loose weight but find that hard.Size14 fall off me but 12's are to tight cos of the bloated tummy.I had acupuncture for IBS and that was fab so maybe I'll look into it for Endo x

 

[dinky]

wow cant believe how many of you have responded! this is great! its nice to have some support and offer support to others! meli tia i find your story about going all natural to be quite interesting! i havent heard of most of the stuff you are taking though lol do you live in the us? to be honest im looking forward to having surgery, i cant wait to be actually diagnosed with endo. im having the surgery as part of a fertility investigation, most of my symptoms point to endo and i too suffer from ibs symptoms. but mine, i can only go to the toilet 2 or 3 times a month (if you know what i mean) then a few days before my period i start to need to go abit more often, then on my 1st day of af it feels like i get period pains plus really really bad painful stomach cramps and then i get diarrhea which blood comes out to from my bowels. the pains last for a day or 2 and there really intense and horrible. im massively bloated a few days before my period but then once ive had diarrhea and that its completely flat again asif im completely flushed out. sorry if tmi!!! sarah your story is really sad. is that a picture of your daughter? shes beautiful! it must of been so hard for you i cant even imagine what you went through! i wish you all the luck in the world for your next pregnancy. faerie i agree with meli tia, your story is amazing! my periods started at a young age too. i was 13. i didnt quite pass out but i missed alot of school because i couldnt cope with my pains. id lie in bed crying with my water bottle not knowing what to do because it hurt when i lied still, sat up, stood up, sometimes i honestly felt like i was giving birth!!! i knew the pains wernt normal then and i kept going to see my gp who just put me on the pill because it was meant to help with the pains. i did help and i was on it for 5 years but gave me terrible migraines so came off it. im happy to hear you are now pregnant! and wish you the best for your pregnancy. nicnac im in exactly the same boat as you! have you got a date for your op? have you concieved before? i havent and ive been trying 2 and a half years. was having unprotected sex years before we actively started 'trying' though. before that it was just if it happens it happens. 4th bump i cant believe how many babies you have lost, each and every one must of been really hard for you, im so pleased for you that you have been blessed with 4 babies though! your right, unlike some of us you are blessed with those angels! how did your op go? are you still feeling sore from it? that seemed to take ages to type out! but theres so many on here now im excited!!!!

 

[dinky]

ohh and im currently 4 days late for af, im on my 6th round of clomid but took a test last night and it was negative. ive got a chest and throat infection at tho mo though could i be late due to that do you think?

 

[LadyBee]

Hey dinky! Glad to see you came back
Unfortunately with endo, AF can be late for no apparent reason. I sure hope it is something else, I mean pregnancy related!!
AF started for me when I was 12, actually just turned 12. I noticed there was a problem when I was about 14-15 and it just went on and on...
Yes, I am in the US dinky!
Ok, I worked really late and I should be in bed now......night girls!