I am 35 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD and now struggle with PMDD. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!





Sunday, October 2, 2011

Say what?

Hello all. Wow. I haven't blogged really in a while. Nor have I been doing well at keeping up with others. Connor turned 7 weeks yesterday. 7 WEEKS. I can hardly believe it. I had my 1 month FU obviously several weeks ago now. Everything was looking good. By now all my stitches should be healed (I had somewhere between 15-20!!!) and I am feeling pretty normal most days. Hormones can still be evil sometimes. Guilt sucks. But, for the most part, my new normal is setting in.

I cannot believe the conversation I had with the OB. On BC. Yes, I typed it. BIRTH CONTROL. Weird. Even weirder to be typing it here on this blog. I stopped BC in 2007. Here we are 4 1/2 years later thinking about going back on. We've been blessed with two sons. One here in our arms, the other in God's. We definitely are not ready for another child right away. Connor is a blessing but I am not sure that I can handle another little one at the moment. Nor all of the emotions that would accompany another pregnancy/child.

But, for now, what? I have a dilemma in the BC arena unfortunately. I only have one option. Mirena. I have a history of migraines with Auras, so, any other kind is really contraindicated. Awesome. I am not too keen on that option-something strange about something being inside me emitting hormones on a constant basis. That just seems so odd to me! So, thinking about NO BC. Condoms aren't my friend...I normally get irritations from them, and, with the healing going on down there I am not down with that. I am pretty sure I can't keep up with chartting at the moment. Life is a bit chaotic. And, then there's my ENDOMETRIOSIS. Ugh. I am so scared about it rearing it's ugly head if I'm not on anything. SO SCARED. And then, on the same lines, maybe we SHOULD just try again since my body is probably in it's best condition ever at the moment? Sleepless nights knock that thought right out of the park most of the time.

What's a girl to do? Anyone have any experience with Mirena (good or bad)? Does it have any benefits with endo? The OB said that there isn't a ton of research, but, what little there has been it has shown a benefit. Any other ideas?!?!?!

20 comments:

Kelly said...

No experience with mirena, I'm on loestrin....and I have NO pain...it's so unbelievable. I hope it stays that way. I have heard good things about mirena. So glad you are doing well!

Heather said...

I had the Mierna for a while, I never had any issues with it. I took it out 19 months ago, ttc #2 I dont think that has anything to do with that though.. The only thing we noticed was my hubby could feel it (tmi I know)

Laura Anne said...

Hi. I also can't do birth control pills because I get migraines from them. I got told I could only have mirena by a gynaecology specialist, but heard some people had lots of spotting and also knew several people who got pregnant while on the mirena coil (this was 5 years ago) after doing research I just was not at peace with the idea at all. anyway, I moved to another city soon after, saw a new specialist and she put me on depo provera injections (which previous gynaecologist wouldn't allow - I'm not sure why). GOD SEND!

I stopped having periods, had no bleeding after the first 3 months, and the pain I had been in previously for many years got so much better. The only down side has been that I have put on weight. I'd never experienced that from birth control before.

katery said...

i have a friends who's got it and she LOVES it. i wish i could get it but with a history of ectopic pregnancy i am ruled out. i've heard it's good for endo patients too.

Jenny said...

Ok first off congrats on 7 weeks!!! Abbey turned 4 months yesterday and I haven't been on any BC...of course I also have only had real sex a couple of times since she was born :S I don't feel ready for another baby/pregnancy yet but at the same time with everything it took to get my daughter, if it happens miraculously without IVF I will be thrilled so I'm just leaving it up to chance.
I can't remember, are you breastfeeding? I know it's not guaranteed to prevent pregnancy but I've not had a period yet so at least as far as the endo is concerned I'm happy about that. I'm hoping to continue nursing at least until I go back to work mid-april and possibly beyond that...I'm loving no periods which means no pain :D
I don't know much about mirena but i agree with you that I wouldn't really like the idea. what about the mini pill or something? Or latex free condoms?

amanda claire said...

7 weeks already! Wow! Glad you're doing well. I had a third degree tear and have no idea how many stitches I had but can well understand the relief that they are healing!

As for the mirena, well it is the only BC I am able to take and I have to say that I am torn between whether to have a new one now Oscar is here. I had my first one inserted during my first laparoscopy in July 2005. What followed was 3 months of sheer hell with heavy bleeding and constant pain. But then I had about 2 years with no periods and no pain and it was amazing. Unfortunately though I started having breakthrough bleeding and pain that increasingly got worse and I had to fight my doctors to pay attention as they didn't believe there was anything wrong. Finally in May 2009, having tried zoladex injections (like Lupron) with no improvement, they did another laparoscopy and I had stage 3 Endo with several organs stuck together. This was without proper periods. So the mirena stopped my menstrual cycle in terms of regular bleeding, but after those first 2 years I had increasing pain and other problems. They inserted a new mirena in 2009, but still had pain regularly until I had it removed November 2010 ready to TTC.

We were incredibly lucky to fall pregnant but my pregnancy was incredibly challenging and I do not want to fall pregnant again any time soon. So BC is no longer just about dealing with my Endo. Which is a new experience for us. I am really dreading making the decision as to whether to have a new mirena or not. Part of me wants to leave it and see what my body does post-pregnancy and whilst breastfeeding but part of me is terrified that if my Endo reared it's ugly head even with BC what will it do without it.

I hope something in there helps. I know it isn't much but I have to say that the mirena was the best BC I ever tried but it was not without it disadvantages.

Jenny said...

I also wanted to tell you that a couple weeks ago my good friend lost her baby girl at 17 weeks pregnancy. I thought of you and your blog. I think that reading how you felt gave me the chance to really help her and understand what she might have been feeling even if she couldn't say the words. She had a beautiful ceremony and had her sweet baby Rose cremated and now carries some of her ashes in a pendant around her neck. I wanted to let you know that Wyatt and you taught me how to be there for my friend in her time of need.

One perfect emby said...

Congrats on milestone for your baby but those questions of BC haunt me as well...me as well having severe endometriosis...Im concerned about trying el naturale when we can but my FS wants me to go on BC when Im finished breastfeeding....

I will be keen to see how you go with your decision as I have no idea t help you

Sonja said...

I had the Mirena for a while; it didn't help much with the pain but I loved it as a birth control method!!

Glad to hear things are so well with you!! <3

Miss Megan said...

I don't have any insight for you with the Mirena but I too have stage IV endo and have been off of BC the whole time since my daughters were born (October 2010). Now that I will be stopping breastfeeding my RE wants me on BC asap to keep the endo at bay. The options she gave me are at a minimum BC pills (or the nuva ring, which I LOVE - you can take it out when you BD so DH can't feel it), or lupron (not a fan). She said without anything that the endo WILL grow back....so...even though I don't want to get on BC and had to fight for 5 years to get pregnant, I will probably be going back on the Nuvaring next month...is that an option for you? I'd be nervous about Mirena too...

Marianne said...

I have absolutely no advice on BC - but wanted to say that I'm glad you've updated us! I hope life with your beautiful boy continues to go smoothly!

Nicole said...

well I have a mirena and have for 7ish months. I found for the first 5 at least my pain was worse. In horrible horrible ways. At 7ish months of it in my pain is down to a 3-6 daily which is good for me. Along with a mirena I am taking gabpentin three times a day and that helps too.

i hear after a year of having it in magical things happen like.. no pain. I'm waiting.

Whit said...

I have Mirena as a treatment for endo (we have no children), and it's worked wonders. I had to stop the pill because I'd maxed out the dosage and it wasn't managing the disease anymore....
It's something to consider. It really has helped me. Also, I've given up soy, and the pain has stopped. Good luck, and War Eagle!

Whit said...

After the pill stopped managing my endo pain (I maxed out the dosage), I had Mirena inserted this Spring. It worked well for a while, but then after pairing Mirena with removing soy from my diet, I am completely pain free.
It's something to consider - somehow the hormones being closer to the disease manage it better. Good luck and War Eagle!

Miss Soap Box said...

I just had my second experience with endometriosis. Operation two weeks ago and I had quite a blast inside to get rid of it. As I am now in my thirties and the pill did nothing to help me, I agreed to getting that artificial lady Mirena inserted. It's been two weeks. I am getting all sorts of pains down that end. Think I am still healing. Hard being back at work sitting in a seat. I hope Mirena prevents another occurrence. This time was so much worse. I was a bit shocked to be honest. I hope I can still have children.

Healthquestgirl said...

I have stage 3 endometriosis. I had my latest surgery in June of 2011 and it was everywhere. My bladder, my fallopian tubes, my bowel and uterus. A month later I had such bad pain, it felt like labor! I passed an endometrial polyp the size of an orange! I was on my SIXTH try with a different birth control( I have constant bleeding and migraines from almost all I've tried, or I lose clumps of hair). I have now had four surgeries in two years just to keep it in check. My last visit to the doctor was sept.4 and he said we'll just take it all out! I have done sooo much research on herbal remedies and nutrition, anything to stop the pain. I was short tempered all the time, especially with my husband and kids because I was in CONSTANT pain. Intimacy was downright scary because it hurt during and for days after. You don't LOOK sick, just tired and cranky all the time!
I started the visalus diet a month ago which is a nutritional shake and vitamin system. Who knew what nutrition could do! It has amazing anti-inflammatory properties from soy without the isoflavones which means no estrogen! Also 23 vitamins and minerals in liquid form. This stuff has changed my life. My pain is down to nil, my energy is through the roof(I get up at 5am and still going at 11pm!), and intimacy is no longer scary. I threw out my BC, and I have something you can't put a price on, my quality of life. I know the frustration and lonliness you feel with this disease. Who can understand that you walk around feeling like you have a hot iron on your abdomen? My first thought when I felt the effects of this stuff was "there is so many women who need this!". If I can help one, it's one who will get her life back. I love these products so much, I became a distributor, even though I work full time as a hair dresser. If you're interested, please visit my website and leave ANY questions. It's newhealth4u.myvi.net. My email is newhealth4u.deb@gmail.com. Also, I encourage anyone to read about nutrition and endo and feel free to talk to your doc about this stuff. I did, and he can't believe he's seeing me walk into his office with this goofy smile on my face! I hope you just read about it and please get in touch with me.

Healthquestgirl said...

I have stage 3 endometriosis. I had my latest surgery in June of 2011 and it was everywhere. My bladder, my fallopian tubes, my bowel and uterus. A month later I had such bad pain, it felt like labor! I passed an endometrial polyp the size of an orange! I was on my SIXTH try with a different birth control( I have constant bleeding and migraines from almost all I've tried, or I lose clumps of hair). I have now had four surgeries in two years just to keep it in check. My last visit to the doctor was sept.4 and he said we'll just take it all out! I have done sooo much research on herbal remedies and nutrition, anything to stop the pain. I was short tempered all the time, especially with my husband and kids because I was in CONSTANT pain. Intimacy was downright scary because it hurt during and for days after. You don't LOOK sick, just tired and cranky all the time!
I started the visalus diet a month ago which is a nutritional shake and vitamin system. Who knew what nutrition could do! It has amazing anti-inflammatory properties from soy without the isoflavones which means no estrogen! Also 23 vitamins and minerals in liquid form. This stuff has changed my life. My pain is down to nil, my energy is through the roof(I get up at 5am and still going at 11pm!), and intimacy is no longer scary. I threw out my BC, and I have something you can't put a price on, my quality of life. I know the frustration and lonliness you feel with this disease. Who can understand that you walk around feeling like you have a hot iron on your abdomen? My first thought when I felt the effects of this stuff was "there is so many women who need this!". If I can help one, it's one who will get her life back. I love these products so much, I became a distributor, even though I work full time as a hair dresser. If you're interested, please visit my website and leave ANY questions. It's newhealth4u.myvi.net. My email is newhealth4u.deb@gmail.com. Also, I encourage anyone to read about nutrition and endo and feel free to talk to your doc about this stuff. I did, and he can't believe he's seeing me walk into his office with this goofy smile on my face! I hope you just read about it and please get in touch with me.

Healthquestgirl said...

I have stage 3 endometriosis. I had my latest surgery in June of 2011 and it was everywhere. My bladder, my fallopian tubes, my bowel and uterus. A month later I had such bad pain, it felt like labor! I passed an endometrial polyp the size of an orange! I was on my SIXTH try with a different birth control( I have constant bleeding and migraines from almost all I've tried, or I lose clumps of hair). I have now had four surgeries in two years just to keep it in check. My last visit to the doctor was sept.4 and he said we'll just take it all out! I have done sooo much research on herbal remedies and nutrition, anything to stop the pain. I was short tempered all the time, especially with my husband and kids because I was in CONSTANT pain. Intimacy was downright scary because it hurt during and for days after. You don't LOOK sick, just tired and cranky all the time!
I started the visalus diet a month ago which is a nutritional shake and vitamin system. Who knew what nutrition could do! It has amazing anti-inflammatory properties from soy without the isoflavones which means no estrogen! Also 23 vitamins and minerals in liquid form. This stuff has changed my life. My pain is down to nil, my energy is through the roof(I get up at 5am and still going at 11pm!), and intimacy is no longer scary. I threw out my BC, and I have something you can't put a price on, my quality of life. I know the frustration and lonliness you feel with this disease. Who can understand that you walk around feeling like you have a hot iron on your abdomen? My first thought when I felt the effects of this stuff was "there is so many women who need this!". If I can help one, it's one who will get her life back. I love these products so much, I became a distributor, even though I work full time as a hair dresser. If you're interested, please visit my website and leave ANY questions. It's newhealth4u.myvi.net. My email is newhealth4u.deb@gmail.com. Also, I encourage anyone to read about nutrition and endo and feel free to talk to your doc about this stuff. I did, and he can't believe he's seeing me walk into his office with this goofy smile on my face! I hope you just read about it and please get in touch with me.

Healthquestgirl said...

I have stage 3 endometriosis. I had my latest surgery in June of 2011 and it was everywhere. My bladder, my fallopian tubes, my bowel and uterus. A month later I had such bad pain, it felt like labor! I passed an endometrial polyp the size of an orange! I was on my SIXTH try with a different birth control( I have constant bleeding and migraines from almost all I've tried, or I lose clumps of hair). I have now had four surgeries in two years just to keep it in check. My last visit to the doctor was sept.4 and he said we'll just take it all out! I have done sooo much research on herbal remedies and nutrition, anything to stop the pain. I was short tempered all the time, especially with my husband and kids because I was in CONSTANT pain. Intimacy was downright scary because it hurt during and for days after. You don't LOOK sick, just tired and cranky all the time!
I started the visalus diet a month ago which is a nutritional shake and vitamin system. Who knew what nutrition could do! It has amazing anti-inflammatory properties from soy without the isoflavones which means no estrogen! Also 23 vitamins and minerals in liquid form. This stuff has changed my life. My pain is down to nil, my energy is through the roof(I get up at 5am and still going at 11pm!), and intimacy is no longer scary. I threw out my BC, and I have something you can't put a price on, my quality of life. I know the frustration and lonliness you feel with this disease. Who can understand that you walk around feeling like you have a hot iron on your abdomen? My first thought when I felt the effects of this stuff was "there is so many women who need this!". If I can help one, it's one who will get her life back. I love these products so much, I became a distributor, even though I work full time as a hair dresser. If you're interested, please visit my website and leave ANY questions. It's newhealth4u.myvi.net. My email is newhealth4u.deb@gmail.com. Also, I encourage anyone to read about nutrition and endo and feel free to talk to your doc about this stuff. I did, and he can't believe he's seeing me walk into his office with this goofy smile on my face! I hope you just read about it and please get in touch with me.

Healthquestgirl said...

BTW, I only posted about this product because when I was at my lowest point, with pain, depression, and fatigue, reading what other women are going through helped by letting me know I wasn't alone, and also ideas for other treatment. I know there is NO cure but I have found a treatment that has helped me 100X more than all the hormones and surgery. It used to be agony even to go to the washroom, and I was rating my pain level as soon as I got up and moving in the morning. I will be posting on other endo blogs with the hope that it helps someone like it's helped me. Thank you for sharing, you never know who will be touched and I am going to share my story with anyone who will listen. Also, congratulations on your baby, which is a little miracle!

P.S. if I posted the first one more than once, sorry! I thought it wasn't sending,lol!