Post # 1
I’ve had endometriosis since I was a teen and am now 26. I had a really bad day today – I doubled over with pain at work, had to leave, and came home and spent the afternoon in bed crying with pain.
I just feel like my body can’t take it any more! I have the worst stage of endo. I’ve had 3 operations and they were all painful with a long recovery. The endo keeps growing back. My last surgery was in 2008 and they gave me a Mirena IUD. I love the IUD because I don’t get my period. Every now and then though, like today, I bleed just the tiniest bit and the pain is exactly the same as it was before the operations – it completely bowls me over and I can’t work or live my normal life. It feels like long knives are stabbing me all through my abdomen and my tummy swells up hard like a basketball. It’s so disruptive to a career/social life/family life.
The pain today was so bad. I took naproxen but it didn’t help much. I don’t know what to do. I feel like my body can’t take a fourth surgery – plus it costs a fortune, and I’d have to take all that time off work. I have a good specialist but the only other option he has suggested is having a baby asap.
This isn’t an ideal time for me to have a baby. I’m in a very stable relationship with my boyfriend of 6 years, we live together, and are getting engaged this year, but ideally I would like to be married first. I’m also changing my career path so am currently just in a casual job, and would ideally have a career on track before going off to have a baby.
Anyone have tips on coping with the pain, or any advice? I’m so upset the endo has grown back. Should I just bite the bullet and have a baby even though my life isn’t quite ready?
Post # 3
awww you poor thing! I suffer from endo as well, but thankfully the surgery really helped cut down the pain (although not eliminate) and birth control has helped considerably in controlling.
have you looked at your diet? Immediately after my surgery I was still getting quite sick with stomach cramps and I found out that I also had a dairy allergy, so the two were playing off each other and making it hard to discover which was causing the pain. I now have a very strict diet and that has helped immensely. Maybe get a food sensitivities blood test and see if there is anything else going on?
I wouldn’t go ahead and have a baby just yet – I know the pain is intense and unbearable at times, but there is no guarantee that endometriosis will go away after having a baby. If you can hold off a year or so, until you have your job a bit more sorted and the wedding is out of the way, do it.
I am so sorry you are in so much pain! Endo is the worst and I really hope that you can find a good way to deal with the pain soon
Post # 4
And I thought I had it bad I’ve had three laproscopic surgeries as well and they did help for me. I wanted to point out from the comment by @cupcakelove that I had the same dairy issue. It really helped to cut that back from my diet. Perhaps you could talk to your Dr. further about food allergies? It’s totally possible that they are making your endo worse.
I can’t believe that he told you to have a baby asap? I know that they say it helps, but if it’s not the right time…. then you would completely want to wait.
I hope things ease up for you. They have a prescription strength naproxen I believe my mom took at one time for endo? I’m not sure but talk to your doctor about pain relief for sure.
Post # 5
I wish I had some advice for you, but i’ve had a handful of laparoscopic surgeries plus a D&C to scrape away bad tissue.
I had a dr tell me that i better have a baby asap, too. But my husband was in Iraq, so uh…yeah….oh, and i was 20 =]. I ended up in the office of a reproductive endocrinologist in st louis who took really good care of me. I was put on an anti-inflammatory diet and lots of birth control (depo lupron, yuck) and it seems to have held it back. But recently i had a period and boy was it bad. I actually take vicodin for the pain. Otherwise i just can’t function and i want to vomit at my desk.
Have they told you where the scar tissue is located? Cuz if it’s all over your fallopian tubes, that’s the worst. You can also get your eggs counted (i had mine done) which helps pinpoint possible hurdles you could run into.
Also i’m sure you know pain is not correlated to how BAD your endometriosis is. So keep hopeful that maybe even though there is lots of pain, that doesn’t necessarily mean it’s growing back. Oh also, they had me on 600 mg of ibuprofen 3-4x a day every day to keep the inflammation down. I thought it was ridiculous until i realized my pain was slowly subsiding. my RE said it takes a week to get into your body to do its job on your uterus. I just made sure i took it with food. But seriously, vicodin made me function. A little fuzzy, but i wasn’t getting sick, ya know?
Could you supplement your Mirena IUD with a birth control tablet? i was on the regular shot for awhile and it did NOTHING to stop my period, so i was on two kinds for the longest time.
Have you talked to your bf about this? About when would be a feasible time to think about TTC and the next steps in your lives, if indeed, you want to go through? If in a year, you’ll be ready to TTC, you’ll have to consider that it may take you time to get pregnant (and subsequent menstrual cycles) unelss you want to jump straight to IVF to elminate it. If you live near a Sher institute, i highly recommend them. i had the most wonderful experience with them, as have many women I’ve spoken to http://haveababy.com/
Also, it wouldn’t hurt to have the discussion of having a family with your BF. I wanted to make sure mine was 100% on board with adoption or surrogacy or medical treatments for my endo before we committed to each other. Just so we’re all on the same page
Post # 6
- Wedding: June 2010 - Indiana Memorial Union
I have endo and so did my mom. Mine isn’t nearly as painful as yours, but have you ever been to a GI? I know it sounds weird, but new studies are showing an occasional link between IBS/bowel issues and endo. I have both and I found that managing both at the same time really helped me.
Also, while I think you should have kids when you’re ready, my mom’s endo was substantially relieved by having kids. But she needed surgery both times to get pregnant.
Since you want to avoid another surgery, and I don’t blame you at all, see if there are changes to your diet that you can make. There’s an actual endo diet out there and lists of foods to avoid. It wouldn’t hurt to try these out.