Personal Introduction

SeasideOasis

Hello, my soon to be friends. My name is Summer. I currently reside in Cleveland, Ohio. I was diagnosed with Endometriosis January 2007. I had many problems for YEARS prior to my exploratory surgery, but was when I was finally officially diagnosed. :grumble:

While I don't seem to physically have many Endo cells, my pain is frequent and causes lots of problems. After starting massive hormone therapy in 2007, I ballooned to my now 165 weight (started off as a 120 woman). My weight gain and endometriosis are pretty closely linked at this point in time.

I have been through more hormones and treatments that I can keep track of to this point. I will be having my second surgery December 6th, 2011. Currently, my only treatment is my Mirena BC. Personally, it has been wonderful. I still get my periods two years later. I still get cramping. However, I am 'typically' more regular and I do not have to worry about forgetting to take medication. If I am in pain, I actually reach for an anti-inflammatory, not a pain killer. Pain killers typically only mess with my gastro track, so it isn't worth it. Once the inflammation stops, so does most of my pain.

I have changed my diet (slowly but surely) to introduce more fruits, veggies and whole grains and taken out many things such as corn syrup (my boyfriend is allergic, so it wasn't too hard). I will stand behind the fact that changing my diet and exercising more have been a HUGE help in making my life more manageable.:happy:

Welcome to the group!! I hope to get to know all of you very well!:flowerforyou: :flowerforyou:

Laura_beau

Thank you for setting this group up!

I am currently un-diagnosed, although I am almost certain I have endo. I am 28 years old, live in the UK and do not have any children yet.

I have been seeing a doctor re: pelvic pain since I was 8 years old, and went on birth control at the age of 12 to control my heavy painful periods. I have had every bc method under the sun to control things- all of which eventually stopped working leaving me with a non-stop period & pain. I had the mirena coil fitted in June this year and haven't had a period since!! My anaemia has susequently gone and I feel much better. Although my pelvic pain is still almost daily and makes working out nigh on impossible some days (

My Mum had endometriosis and had a hysterectomy at 25, her Mum and 3 older sisters also had hysterectomies due to period/pain issues under the age of 40. Ive had 6 internal/external ultrasound scans, a colonoscopy, hysteroscopy, endoscopy, blood tests etc but I havent had the only procedure to diagnose endo- a laparoscopy. I am seeing my gynae on 6 December to dicuss where we go from here but I know he is reluctant to do the surgery as a) I am overweight and b) have had previous abdo surery so there will likely be a lot of internal scarring from that.

If he sends me away I will most likely get a 2nd opinion- I am sick of being fobbed off and patronised!!!!!!!

Anyway- sorry for the rant and its nice to meet other sufferers x

jenben80

Finally some women I can relate to!

My name is Jenny. I was diagnosed in 2009 with severe Endometriosis. I have been on BC off and on since then. I currently went off completely in July of this year. I am TTC right now. So far I have had no pain. Thank God! I have cut down on wheat and dairy which I read could alleviate pain. Maybe that's why? I am currently trying to lose 30 pounds.

twinsanity

What a blessing this group is!

Hi, I'm Courtney. Most of my childhood I watched my sister throwing up violently every month when she got her period, and in more pain than was imaginable...until I got my periods, at age 8. I watched my sister struggle for year with her endo, so when I started and was having the same symptoms, I figured why bother going to a doctor; they can't help her, what makes me think I'm any different.

I was finally diagnosed when I was 14 with endo. I was put on BC pills to help 'control the pain'. That failed miserably. I was eventually told that due to the endo I would probably never have kids. Again, fail...I have 6 year old twins. lol The pain, however is a whole different ball game. People don't understand the amount of pain that comes with endo...it's not just cramps that I can pop a Midol and be rid of. I am currently not doing anything for treatment. I was on so much BC when I was younger, though, and none of it seemed to help. I finally got to a point that BC (depo, mirena and many different pills) was actually making me hemorrage. The last BC I was on, which was depo, I hemorraged and had a heavy period for 21 months straight, until I finally got a doctor that could stop it. I can no longer take BC, of any kind. I had spoken to a doctor when I was 24 about having a hysterectomy, but they weren't willing to do it on me because I was so young, and I might want more kids. I have twins, that's not happening again!

For now, I live with it. The pain seems to be taking on a life of its own now, so hopefully in the next coming years I can get everything pulled out and finally have some relief. My heart goes out to each of you, I know how hard this disease is to deal with. I'm so glad we're all here to support each other, not just with the endo, but the weight loss as well!! Good luck to all of you in your journey!

calderst

I was hoping someone would start this group. It's astounding to me how many women suffer with this and we don't realize it. Knowing we have a place to share-- or rant-- is comforting.

I have probably had endo since college but was not officially diagnosed until about 4 years ago when I had a tubal. I'd been on birth control and it was making me CRAZY. My husband & I had decided before we got married that we didn't want kids, so I figured the tubal was the best choice for me. Turns out I probably couldn't have gotten pregnant anyhow, but it was the right decision for us.

About 6 years ago, I was at work and had this intense, horrible, agonizing pain in my lower abdomen. I have IBS/Colitis so lower abdomen pain is nothing new for me, but this was different and INTENSE. I found my way to the ER where I was misdiagnosed with a UTI. A week later, I still had some residual pain and I was not convinced it was a UTI. My Dr had the sense to send me to a gynecologist just to check things out. Unfortunately the Gyn. was an @sshole (pardon my language but I still have strong feelings about this...) who did a very brief & painful pelvic exam, looked at me like I was an idiot when I suggested it wasn't a UTI, told me to "lay off the sex awhile," and sent me on my way. Since he gave me the "all clear," my Dr sent me to several other specialists to try to figure out why I was in pain-- I was 25 yrs old ,active, and a healthy weight. The urologist wasn't concerned, the GI Dr said it was probably gynecological, but since this "respected" colleague said I was fine, nobody seemed to think I should have any gynecological tests.

After talking to some friends in the medical field and some women who have similar issues, I determined that my initial pain was very likely a cyst bursting. It's happened a few times since then and it feels the same. I don't wish that pain on anyone.

Fast-forward to a new town and new Gyn. who just happens to specialize in Endo. He's the one that performed my tubal and discovered my endo. He wasn't prepared at the time to remove the diseased tissue (since we didn't know I had it) and recommended surgery at a later date. I decided to wait as long as I could on the surgery simply because I didn't want to put a hold on my life for a few weeks to recover.

This summer, things got bad. I was having more pain than normal. I expect awful pain for my periods and some cramping when I ovulate but I started getting new pain & spotting for no reason. I started to worry that it was a giant cyst that was just waiting for an inopportune time to burst. I decided it was time to go back to the Dr. After sharing my new symptoms, he did an ultrasound and told me I had to get the surgery that month.

So I did.... 7 weeks ago. And I'm so glad I did.
I had spots in my bladder, womb, & uterus, and my uterus evidently was no longer in the correct position. Both of my ovaries were jam-packed with cysts-- the pictures looked like a sack of grapes.
And the new pain I'd been feeling.... My right ovary had adhered to the wall next to it. Instead of floating around like it's supposed to, it couldn't move because it was attached. My sack of grapes had grown roots.

Needless to say, I'm feeling a bit better. My periods are down to 5-7 days. I made it through the last one without heat (I used to get the disposable heating pads and wear them to work) and by following normal dosage on the tylenol/advil. Intercourse hasn't been painful (tmi probably but there used to be times when the wrong "angle" would send pain through my whole body). When I run, it no longer feels like someone is stabbing me in the side of the stomach.... in fact I'm doing a marathon next Saturday!!

I know there's a high likelihood of it coming back and I'm not out of the clear, but I'm definitely doing much better than I was.

I'm looking forward to hearing your stories and learning what helps you with your symptoms!

AmeChops

Woohoo...an Endo group!! Hi everyone :bigsmile:

I was only diagnosed with Endo a few months ago, I was also diagnosed with PCOS back in 2008 after coming off BC and my body going a little crazy.

I was fed up being in so much pain all the time (plus my husband was fed up with me moaning and not doing anything about it), what I presumed to be down to the PCOS, but things didn't seem to be quite right after I started trawling the internet forums. I went back to my doctor and after a bit of on in depth chat, more blood tests and various <ahem> examinations he decided to refer me to a specialist.
Luckily I managed to get in to a private hospital but under NHS and after a 15 minute chat with this specialist he said he wanted to do a Laparoscopy...a few weeks later I was in. He showed me a picture of the patch of Endo he found...I thought "oh it's only small"...apparently it's actually quite large...I believe he used the term "angry". He said it has probably been around for about 8 years or so. It's kinda pulling my bowels and uterus together (sorry of TMI there) and has formed around some nerve?? So...I'm now booked in to have another Laparoscopy on 13 Dec to have it removed.

When I was booking the appointment though, the lady on the phone said it had taken a while because the chap wanted to have another chap perform it with him - they're both very good doctors apparently - this has got me a little worried though...why would I need 2 "really good" doctors...is it that bad?!

I don't really have bad periods as such, it's just the pain and I get really emotional...although that could be down to the PCOS...who knows anymore!! I guess having both of these would explain me generally feeling like poop all of the time.

Has anyone had a Lap to remove Endo...what was the recovery time like etc??

Laura x

calderst

Has anyone had a Lap to remove Endo...what was the recovery time like etc??

I had the Lap plus spots taken out of my bladder and my uterus moved around a bit (the cartilege shortened?)-- I had it done on a Tuesday and went back to work on Fri. It was rough that first day back and I still had quite a bit of swelling. I took it super easy that weekend then started feeling almost normal the following week, with the exception of bending over to pick things up. I wasn't allowed to resume full activity until I had my next period, which was about 3 weeks later. I started running again as soon as I got my period (surgery was smack in the middle of marathon training). This was all at the end of September/beginning of October. I feel great now for the most part.

My lower abdomen is a bit bigger than it was pre-surgery. Not sure how much is from scar tissue, how much is the five pounds I gained (eating junk and not working out for 3 weeks), and how much is from not doing any ab workouts for a few months. I'm hoping once I remove the extra 5 lbs and get back into a good ab routine, I'll be back to normal.

SalishSea

Hi everyone! I too am an unfortunate person with this horrible endometriosis. My major symptom is PAIN. I have a long and sordid experience with endo. I have had it sine I was 16. I am now 42.

I have done everything for this endo. My last endo treatment was yet another surgery, 7 months ago. But this time it has helped the most. In the last 7 months, I have only had pain 3 days. I live in fear the pain will come back. Everyday, I say please no pain.

I gained 60 pounds the last 10 years dealing with endo. I was on Lupron for 14 months and gained so much weight. I have to be in pain and fat too? Life is so hard.

We deserve a medal. Maintaing our lives at work, home, and everything. I would like to see others struggle through the excruciating pain everyday and still manage to get to work, raise children and keep going at life.

I have years of endo experience. If anyone wants to ask me a questions, please do. I may not have the answer but I would love to collaborate on how to help. I know a gifted endometriosis surgeon in Washington State if someone wants a name.

Let us be well and pain free. Please.

Jetsetter10

My first post on MFP will be about something near and dear to my heart (and my ovaries, bladder, and bowel) -- f'ing endometriosis.

I was diagnosed with endo in 2008 (age 28) after years and years of horrible, blacking-out-bad periods and stomach issues. I was on the pill from age 16-26 and I felt okay during that time, but once I went off when we started trying for a baby, the awful periods returned.

I had my first lap in 2008 which diagnosed me with stage 1 endo. I then did months of Clomid and then Femara before some other tests results came back saying I was suffering from not just endo, but premature ovarian failure as well. I had another lap in August 2010 and it was discovered that I had stage IV "gastro-intestinal" endo all through my pelvis with nasty adhesions, including both ovaries being stuck to things they were not supposed to be stuck to, like my colon and growth involving my bladder. They removed the growth and adhesions and I had a really rough recovery from that surgery. My doctor recommended IVF as the only way we could conceive, so we did one round in January 2011. It was unsuccessful and the pain that followed was unbearable.

I had a third lap in June 2011 and sure enough, in less than a year, the endo was worse than ever. We still wanted to try IVF one more time and we did, again unsuccessfully, in November 2011. Now, I wait for the awful stuff to grow back again. I have bone density issues from the cycles of Clomid and Femara so I am refusing Depo Provera or Lupron therapy.

The endo has damaged my ovaries beyond repair, has caused bladder issues (interstitial cystitis), and incredible gastro discomfort. It's taken away my dreams of biological children and affected my quality of life in ways I cannot even put into a post on a message board. It's a life-altering disease.

That said, after my 2nd failed IVF in November, I gave up wheat, sugar, and processed foods in an attempt to lessen the inflammation in my pelvis. I have dropped 20lbs since and feel great. I have more energy and less pain than ever before. Yes, I'm still bedridden for a few days a month (and have to dope myself up when my body is trying to ovulate due to the pain) but it's been a very positive change for me. I'm hoping that my new way of eating will help all aspects of my life, not just my endo.

krisrpaz

I have always had very heavy periods. As a teen, I remember even if I put a super pad and super tampon in before bed I would wake up in a puddle of blood. I went on BC when I was 15 and it helped make me "normal". I gained weight and reached my heaviest 290 when I was 23 and stopped having periods, sprouted chin hair, acne, etc. I was diagnosed with PCOS and attributed it to all my previous issues. I went off BC at that time since I believed I didn't need it. Two years later I joined MFP and 72 pounds later, my periods have been getting worse and worse. I was telling my mom and she told me recently she had a bladder surgery and they found endo in her. So I went to my gyno and told her about my mom and all the problems I've had. She said I most likely have endo too which was being masked by my PCOS and now that I've lost weight and am ovulating again the pain is back with a vengeance. She recommended Mirena which I am supposed to have put it next month. If after 6 months that pain has not decreased, they will do a laparoscopy.

For the last 10 days I've had cramps and a little bit of brown stuff. Today the floodgates flew open. Went through a super tampon in 30 minutes, a new personal best. The pain is....intense. I actually cried. I'm usually really tough when it comes to pain but this is rough. I've cancelled my plans for today and plan on spending the day on a heating pad. I've taken prescription anti-inflammatories and a muscle relaxer but it probably won't bring much relief. I also have pain shoot down my legs, I get light headed the first couple days and almost lose my appetite completely from the pain. I'm painfree about 1 week out of the month. I really look forward to that week...My most recent symptom, and worse in my opinion, is pain with sex. This has been the last 3 months. I'm hoping soon this will get better. I hate for it to affect my husband too.

SalishSea

Welocome aimssc,

I am sorry for your suffering with endo. I can totally relate. I hope you feel better. Endo does respond slightly to a changed diet, for me a least.

I have been hearing a lot about having endo but not very many endo cells. How is that possible? Could I have that?

Glad you found this group. We endo women need to stick together for support because this condition can overwhelm us in so many ways. The worst way is being overwhelmed by pain.

ashley2586

Hey Ladies!

I only recently found out that I have endometriosis.

February 10, 2012 I woke up to severe pains. I had been on my regular monthly cycle for a few days so I kinda blew it off as cramps(although I rarely had cramps!). As I got to work and continued to be in pain and could barely walk I decided maybe it was a bit more serious, possibly appendicitis, as the pains were on my right side.

I arrived at the hospital and was told they would be doing an ultrasound(to rule out any girl related problems, as these test results came back quicker) as well as a CT scan. As soon as the tech started the ultrasound she saw something and was talking with a co-worker about "see how big that is?" SCARED THE LIVING H*LL out of me!!

They soon wrapped up and sent me back to my room to wait for the CT scan, which was very standard, nothing out of the ordinary.

I then waited several hours to hear back from the Doc. (it was at this time that my dad's employer emailed him to inform him i would be off his insurance on the 29th of the month)When the doc came it, the news wasn't great. He would have to refer me to an OBGYN because he didn't know what it was, he only knew a mass the size of a grapefruit was in my pelvic area, and couldn't tell where it was coming from.

I soon met with the doc he referred me to and she had her own ultrasound ran on me. They still were not sure what this mass was but she thought it was crucial to have it removed. She sent me for blood work and scheduled surgery for the 23rd of February.

Still not knowing what was wrong with me, I was stressed and panicked. This was not the worst surgery I had gone through, but much more emotional. the doc had explained that she may have to do a complete hysterectomy( I'm only 26, I haven't had kids yet and that is something I have looked forward to.) My boss found a temp to cover while I recovered, luckily she held my job for me!!! And then I got a phone call....one of the blood tests they ran had a high number count, before surgery could happen I needed to be retested. I was a bit shocked and didn't hear exactly what they needed to retest, so to calm my nerves I called my nurse back, she said it was to check for cancerous cells(this did not calm my nerves!)

The next day I went to have blood drawn again and tried to keep my mind occupied elsewhere. I then went for pre-op. The doc had great news this time! It was not cancerous, my numbers were only elevated by about 40, if it had been cancer it would have been elevated by the thousands!! This brought some relief!

Surgery day came and everything went well. When I woke up, momma told me they removed the grapefruit size mass that was on my right ovary, as well as the ovary and fallopian tube. While they had me open they found a golf ball sized mass on the left ovary, but could cleanly remove it, leaving just a bit of scar tissue.

They also noticed that my left fallopian tube has been damaged and it is likely that if and when I decide to conceive I will need in vitro or just best to adopt.

To try to preserve the left ovary, and prevent further masses, my doc does want me to do the lupron shots....currently, with my insurance just ending I could not afford to do so. I currently take a continuous cycle of birth control pills until i can afford new health coverage.

Sorry the post is so long, I haven't really had anyone to talk to about it with. I feel very fortunate that I really never had the pain that so many seem to suffer, but I am much more emotionally effected by it all.

solodancer

I'm 23 and got diagnosed with endo last year after suffering since I was 17. I had a lap and spent 2 weeks recovering, I then was in the same old pain straight away again, I went back and they discharged me, I wrote to my gynae and she saw me instead of registra and I had another lap (2 in 6 months) again they found it and took it out, spent 3 weeks recovering and I'm still recovering ( had it last day of feb this year), my joints kill, my muscles ache and my stomach is always sore and tender. The only pain relief they can be bothered to give me is co-codamol, some use that is! And as my weight loss slowed down and I constantly got bloated and they've now given me fibregel to have with it for a slow digestive system
pffffft never ending pain in the bottom this horrible disease

kristelpoole

Hi Endo-friends,

I had another appointment with my gyn yesterday and figured I'd post an update/intro. I've had severe pain during cycles since I was about 16. I did a bunch of online research and then saw a gyn. I asked for birth control to help and she assumed I just wanted it so I could have sex and was more concerned with that (idiot...) Anyway, in college it got worse and I was finally diagnosed with Endometriosis in 2005 with my first lap. They were able to remove what they found. I was on depo (devil drug) and gained weight and hated pretty much everything and everyone. The pain slowly came back and the last few years have been the worst. I finally couldn't take it anymore last year when my pain was daily (regardless of cycle) and sometimes very long-lasting.

I had my second lap in Dec 2011 and the recovery took about a week. The spots they found were small (not that that matters when considering a patient's pain...silly disease) but in very hard-to-reach places so it took two surgeons to perform the removal. They also discovered at that time that I suffer from diffuse adenomiosis, which is extremely rare in women who have not had children yet or are not in menopause. It was inoperable as far as they could tell and my uterus is shaped like an ovular balloon rather than the pretty triangular shapes we are used to seeing. The doc expected I would still have pain from that after surgery and only time would tell when/if the endo would return. Fertility? Who knows... They won't really know anything until I TTC.

Well, needless to say, the pain has returned and it returned quickly. The past few months have been awful. I have pain almost everyday. I am on the Nuvaring, which I like for its convenience and ease in skipping cycles (I try to have 4 a year). My pain is getting worse and worse and I am so sick of taking strong pain killers that make me feel so loopy and out of it and tired. I'm already healthy - I eat well, I exercise, and I avoid a lot of processed foods - so there isn't a lot the doc said I could do in that area. I'm on Ketorolac this week to help me get through my ring-switching week, which sucks. It's soooooo painful. I've cried pretty much everyday this week.

Anyway, I was talking to my doctor and I was telling her honestly how this disease makes me feel. I hate saying the word disease because I don't feel like I should have a disease at all! I'm healthy, I work to make sure I take care of myself - what the hell, right?! But alas, what we have is real even though it's impossible to describe to someone in one sentence when they ask what's wrong or why you aren't feeling well. I never know what to say. I feel like everyone thinks I'm crazy, and I wish I had the courage to organize the kind of rally that breast cancer and luekemia have - find a cure for us, dammit! But I'm not that brave and it makes me embarrassed even though I know it shouldn't. My doctor told me that chronic pain (especially with something as close to our hearts as women as endo is) can affect us mentally and emotionally just as much as it can affect us physically. So she's decided to keep my on the Nuvaring and then put my on Cymbalta for a few months and see how that helps...

Anyone here ever taken Cymbalta to help pain management/mental health?
Anyone relate?

myadorkablelife

Hey Ladies!

I'm SO GLAD there is an endo group on this site!

I'm days away from 28, from Chicago... I'm not officially diagnosed (no surgery--thank insurance companies), but all the doctors I've seen are convinced I have endo. Back in 2010 I went to the ER with sever pain and they found a lesion on my left ovary. I couldn't believe something that small could render me immobile. (I'm now convinced it's in my bowels too. Gross.)

Anyway. Still can't get my surgery until 2013 (again, insurance)... so I've been on Norethrinedone (sp?) since Dec 2010. Only maybe 3-4 periods since then and they've all been absolutely miserable (but at least short, 2-3 days). Previously i was going 18 days between cycles...

I've noticed the bloating a lot... but until recently didn't think it came with weight gain too! I think I've put on 10-15lbs since first going to the hospital. It's hard to be active when it hurts! (WiiFit Plus Hula Hoops = PAIN.)

ANYWAY. VERY happy to have a group of women to share this journey with!