Lost in the pain.....

Here's my story, although I'm sure it's not that different than many of you out there...

I started my period at 12 with pain, cramps, irregularity, heavy flow and clots. I have also been overweight my whole life. Years of complaining to quack doctors about my painful periods led to being put on BC and told to lose weight. No one would ever listen to me and actually test me to see if there were anything wrong.

When I was 29 in 2001, I decided to undergo Gastric Bypass, having reached 389lbs. By this point, my periods were erratic, extremely painful, heavy- nothing had changed since day 1. It feels like I'm being stabbed repeatedly with a hot spear or a rusty knife that's being twisted around and around... I get nauseous, sweaty, and no matter what I take, nothing helps. At times, I can't do anything more than curl up in the fetal position on the floor and rock. The morning of my surgery, my surgeon (who used to be an exploratory cancer surgeon) and I discussed my bypass, and I brought up my periods, and how I could never get anyone to take my pain seriously. She agreed to "reach around down there" (TMI! LOL!) and see if there was anything while she had me open. When I woke up in ICU, she told me that they had to call in an OB/GYN because they found endometriosis the size of a grapefruit wrapped around my left ovary. They had to remove the ovary, and I lost so much blood that I had to have a transfusion. I felt vindicated that I finally had proven that there really was something wrong, but robbed of my ovary and all the years of fighting with doctors over my periods. It wasn't in my head!!

In the next 2 years, I managed to get down to 185lbs, but still had pain and heavy periods. "Can't blame my weight anymore" was my motto! I went in for an internal ultrasound where they found 3 small fibroids. Great. My doctor said that we'd watch them, but they weren't a big deal. I was also diagnosed as anemic- well duh- let's see you lose as much blood as I do every month and we'll see if you're anemic too! But no reason as to why my periods were so messed up. Must be the endo- let's put you back on BC. Wonderful.

About this time, other changes were going on in my life. I got married and laid off from my job all in the same month. My husband also got laid off from his job shortly before we got married. We lost our insurance, and didn't have it for 4 years. I went back to school to get my BA. This whole time, I was worried about what was going on inside. I would go to the health clinic on campus for help, but they were used to dealing with STD's and how to put a condom on- not complicated cases like mine. My doctor there did her best, putting me on BC and iron pills (which I reacted to poorly and stopped taking)- yet again. Just as well, because at that point, we couldn't afford to be pregnant anyway. Plus, sex was painful. My poor husband felt like it was his fault. At times, we would go for weeks without because it hurt me too much.

In 2008, our situation improved. My husband got a job with medical insurance and we wanted to start our family, so I quickly made my appointments. An internal ultrasound showed that my fibroids had grown 10 times their size. But something new was added to my diagnosis- Ovarian Cysts. Three in my poor little ovary. My OB decided to put me back on BC to "see if they'll resolve themselves", otherwise, he'd try to do surgery, since we wanted to get pregnant. Otherwise, he'd recommend a hysterectomy. Luckily, the cysts went away, I burned my BC, and we started trying to get pregnant in Oct 2008 (I was 36).

The past 2 years have brought more of the same- my periods are still very painful, heavy, clot-filled messes. My GP treats me like a drug fiend for asking for vicodin to help with the pain (since I could take entire bottles of Tylenol, Advil, Allieve and Motrin and still have no relief!) I have also gained some weight back- I'm up to 260 (so, not where I was, but still down 130lbs from my heaviest.) But worse yet, I haven't gotten pregnant, and sex still hurts. But I grit my teeth and bear it, since I know that if we don't, we won't get pregnant! lol! My periods have begun to get even more "weird" (if that's even possible)- I have them regularly, about every 30 days. But I tend to spot for 3-5 days before, go super-heavy for 5-6, then spot for 5 more. I also have pain mid-month, usually with a discharge (I assume that's when I'm ovulating, so hubby and I "step it up" during this time! Painful, but... ) My OB sent me for another ultrasound- "no changes internally- it's probably your weight" (grrrrrrr!!!!!) and sent us to a fertility doctor.

I have to say that this past Friday was probably one of the worst days of my life. Day 3 of my period, bleeding like crazy, writhing in pain, we went to see the specialist, who did his own ultrasound right there in the office. After 2 hours of talking with him and reviewing the results, he informed us that I most likely have adenomyosis, not fibroids. The only way to tell for sure was to do a biopsy on my removed uterus- yes, a hysterectomy. The only way to stop the pain and heavy bleeding is to have a hysterectomy. Chances of getting pregnant according to him? Slim to none, since it's been 2 years of trying and I'm now 38... Try IVF? Spend around $20,000 (our insurance doesn't cover it), but there's no guarantee. Oh yeah, we can always adopt.

I'm sorry, but this is not what I want to hear. I have always wanted to be a mom, and have longed for the day when I can put my son or daughter into my husband's arms for the first time... Don't get me wrong, I am open to adoption and all that goes along with it. But is it selfish of me to want to have my own baby? My mantra every month that I go through this hell has been "I'm doing it for the babies". It's the only thing that has gotten me through. And now they tell me to "give up" and have it all ripped out because I'll never get pregnant? I can't believe it.

My husband (who's been very supportive) says that we shouldn't give up, and I agree, but it's hard not to want to do my own hysterectomy when I'm squirming around in pain. Even while I type this, I am doubled over in pain. I've taken 2 vicoden in the past 4 hours, and it hasn't helped. My girlfriends don't understand- they suggest a warm shower or a heating pad. They say- well, there's adoption. Yeah, there is that, but........

So where do I turn? The internet hasn't been too helpful- sites say my only relief is a hysterectomy. Most people my age have already had their kids, so having a hysterectomy isn't such a big deal. But what about me? Is there anyone out there that is/has experienced what I'm going through? What do I do? Where do I go? Do I throw in the towel and forget about ever giving birth? Or do I fight my way through this pain every month in the hopes that by some miracle I get pregnant or win the lottery so I can afford IVF?

I just feel at a loss with nowhere to turn. Maybe there's someone out there that can help.

Lost in the pain and heartache- Kerri

[rgmttc]

My situation is a little different... but I think I understand some of your concerns... I do, however, have 2 beautiful children.... BUT please understand that the want that comes from deep inside is just as strong... I feel like my husband and I are supposed to have THREE! And the "comforting" words of friends can sometime sting like a bee.
I tried for 5 years to get PG with my first... once PG had 2 within 17months of each other (a sign that the 1st PG helped me get PG w/ the second by easing the endo) Anyhow, I have been trying now for 3 1/2 years, it has been a crazy emotional battle. Have been an emotional wreck leaving a great job to stay home and TTC. The latest in my story was the actual diagnosis of endometriosis. I got PG lost the baby at 7 weeks and we found a cyst. Monitored the cyst for 6 months with grew to the size of a large baseball... we scheduled surgery to remove cyst and possibly the ovary with it. Turns out the 45 minutes surgery took 3 1/2 hours and a 7 inch incision later they took out the right ovary and the large endometrioma (cyst) and as much of the endo as he could. Now things are up in the air. HE thinks my chance of getting PG naturally are slim.. that I should do IVF... (MONEY) BUT I believe ... despite what others are saying about my quest for one more that God would not have given me the desire to continue on if there wasn't a reason to do so. So, I will take my HUGE scar into the future and continue to search for the answer. I hope that you will also.  When the time comes for you to stop your search God will give you peace... but until then it is not any of "their" concern how welive our lives and go about fulfilling our dreams! As far as dealing with the pain... I only just found out that I had endo.. but in the past 2 years have been to the ER on 3 different occasions due to pain on my 2nd day of cycle.  Wish I know then what I know now.... I perhaps wouldn't have this huge scar on my belly!!! Best to you and your husband... I will be praying for you and your journey!!! Thanks for sharing and I hope just knowing that someone read your story and can relate might give you some peace. Have a great week. rgmttc

[ticked]

I am so sorry to hear about this and I can imagine how frustrating it has been for you.

I totally get the whole vindication thing as no one believed that anything was wrong with me for 15yrs and I had this surgery to pretty much tell them "see".  

You havent mentioned anything about rectal pains, do you get those?

If you need to talk send me a message :)  I am always here to listen

[ashleyanne84]

Everything about you is me except I was lucky and had a baby girl in July 09. I too had Gastric Bypass. I was 288 and got down to 165 and then I got pregnant and Im now around 210. I can't seem to get this weight off. My surgery was in Nov 07. I too have endometrosis and fibroids. I had surgery and some biopsies done about 3 weeks ago. Im still in horrible pain. My OB doesn't understand why Im still in pain and wont refill my prescription. Im in horrible pain and have no insurance until the first of Feb. I could go to the ER but don't want to resort to that. I just feel like crap. Im seriously thinking about going ahead and doing the hysterectomy once I have insurance.

[lomi777]

Hi All im 35yrs old no kids have adenomyosis I have been taking medication 75mg of Amitriptalyne per day + tramadol/tramacet for pain relief the amitriptalyne was the only drug which drastically gave me pain relief i would reccommed it to anyone to try instead of hysterectomy. I now however have to come off all medication to try to concieve (conceive) as cannot take during pregnancy. so fingers crossed have to wait for my periods to come back as i was on the contraceptive pill cerazette which also helps endo and adenomyosis as well had endo removed in feb 2010 and previously when i was 25yrs endo usually reappears after 5 yrs mine did!! am now looking at alternative therapies for pain management until i get pregnant not relishing the pain levels which are about to get 10 times what they are now!hope this helps