March is Endometriosis Awareness Month, see this site for information about this month and the history of it becoming an awareness month, and I am going to be more active this year than I was able to be last year. I don’t know how active I’ll be able to be, but I’m doing as much as I can.

I had Johnny (my husband, formerly known as E on this blog) take a photo of my stomach one day after I realized that my belly always gets burned because of how hot I need the heat for it to start helping. I had wanted to take a photo of it, and realized I wasn’t going to manage it on my own, so one day I asked him to photograph it after I’d been using heat therapy for my pain for awhile. I had orginally planned to use it as a Wordless Wednesday post but decided I would just save it for Endometriosis Awareness month! My thought was something along the lines of “this disease may be “invisible” since it can’t be seen without surgery, but it certainly leaves it’s marks on our bodies if you know where to look and what to look for” … both surgery scars and the burns are some of those marks. The below photo is the result.

(I tried for a larger photo, but the next size up gets cut down when I preview the post.)

I published this photo on my facebook, and tagged my endo sisters who are on there (who I am aware of, I hope I didn’t miss anyone, it was late at night when I did this) to it.

It’s received a lot of talk since I posted it. And I realized I’m not alone in how much heat it takes to start giving me relief. I thought I was odd in allowing myself to burn my skin sometimes multiple times a day just to get some pain relief. It seems, however, that I’m far from the only one.

I have asked my fellow commenters on the photo if I could reprint their comments over here… and as the replies come in I will be adding to it.

The caption I put for that photo on my facebook is as follows. Endo (endometriosis) is a disease you can’t see on the outside (other than swelling/bloating and the scarring from multiple surgeries) however here is one of my signs I have it… I have to heat my heating pads so much that they burn me so I can try to get enough heat to the pain to even start touching it. And generally one of the ways it helps (besides giving some relaxation) is because I get so distracted by my stinging skin that I feel it a bit less. I am not saying this is a good way to handle it, and I don’t recommend anyone doing so, but I did want to show this.

Not long after that I tagged my sisters and started getting responses.

The conversation just took right off.

Jenny started off the conversation with I have that same “rash” from my hot water bottle (and my laptop, lol) and it just took off from there.

(Note: I’ll just be putting names with the comments after this as well as links to their blogs if they have one and give permission.)

Me: I get it from the laptop too, but generally that’s my legs rather than my actually belly.

Jenny haha…yeah that’s what I meant lol

Sonja I think it brings out our eyes.

Maman Auren: Mine gets like this too.
:: hugs ::

Me: LMAO! Good one Sonja! 😛

Me: Maman Auren – I think too many of ours get like this… Part of why I posted it is to show that our disease may be invisible in the way “invisible illness” is meant, but it’s still far from being hidden if we show what it does to us to try to put off some of the pain. ((Hugs))

S (a cousin of mine who is in nursing school): I don’t have Endo, but I’m a nursing student here in California and Jennifer is my cousin. i’m so sorry you all deal with this. just in case I ever have a pt with endo, is there anything that works for your pain other than using scalding heat? or is it the heat that starts to alleviate it in combination with something else? your gal’s imput is the better than any book can give me. 😉

Jenny the heat is definitely the best at keeping my pain gone while waiting for my naproxen to kick in (before my surgery I needed percocet but now I don’t need that). I also find that biting down on my finger helps…probably not a smart thing to do, but it helps. Sort of the old cause pain elsewhere to help you ignore the worse pain.

Steph Hi S! You are so awesome for asking this question, thank you! 🙂
I use large hot heating pads (rice or corn based, because the weight plus the heat is what works for me) in addition to Tylenol 3 and Ibuprofen to help with the pain. Acupressure doesn’t help me. Other narcotics and opiates give me horrid side effects. Moving around (i.e. any form of exercise, including gentle yoga) makes me want to scream, the pain is so bad.
The heating pads (I have three) along with the medication are the best for managing my endo pain.

S: Thanks girlies! I don’t get to prescribe meds, but i can help with heat, ice, pillows, back massages… anything like that. is there anytime of the month that the pain is less, or is it always there?

Jennythanks again for asking! For me, it’s really only there around ovulation and the second and third day of my period.

Steph For me, the pain begins sometimes a week before menstruation, sometimes just a few days before.
Once I am menstruating, the pain is at its worst – I am bedridden with the heating pads night and day for up to four days.
I get ovulation pain 8 days after the end of my period, and that sometimes lasts for a couple days, but it’s really short violent bursts compared to the bedridden time, which feels like white hot roto rooter throughout the pelvic region…

Me: Extreme heat and pain meds seem to be the best, though depending on the type of pain I find that moving through the cramps (large hip circles, that sort of thing) helps… if I can psych myself into actually doing it.. it takes a lot to get off the couch or out of the chair or whatever. Some days Johnny comes home to find me in the same position I was in when he went to work or whereever…. and has to help me get to the bath or whatever. I also find that patches (Bengay, Tiger Balm, that sort of thing) help. They aren’t necessarily a huge help, but every little bit of pain relief I can get helps. Since my miscarriages I have more days where I’m in pain than out of it, though after my last surgery I was pain free most of the month, and the pain was greatly decreased during my period. So the amount of pain days really varies by how much disease activity there is at the time. NSAIDs and vicodin are both things I take for the pain, depending on how bad the pain is and so on. I’ve had to cut my NSAID use. Back rubs help, especially in the lower back… I’ll ask Johnny the location when he gets up, since he should be able to give you a more technical spot… it’s that area that some women (all women?) get some inflammation in their back during their periods… There are two nodes that swell up for me, and for other women (both endo patients and not) who I have spoken to about it. My EndoFEMM (which a corn filled heating pad that is microwavable) helps a lot more than just a regular heating pad, due to the weight and heat, though regular heating pads help as well. As I think of other things, or find other things, I’ll do my best to let you know. 🙂 ((hug)) Thank you, as I’ve been telling you this means so much! I can’t thank you enough… there aren’t words!

S: I’m seriously speechless after reading your girls’ stories. No words. That’s insane! I’m sorry that there are people in health care that don’t understand this or even don’t believe it. oh my gosh. wow.

Jennywhen people ask me about dealing with endo I say: “think of when you get a paper cut or stub your toe…it’s sudden sharp pain followed by throbbing dull pain and it’s pretty much impossible not to focus all of your attention on it, right? Well with endo it’s kind of similar but the pain lasts for hours, days and for some women weeks. When you aren’t in pain, you are thinking about it too…because you know when it is likely to show up…chronic pain tends to dominate a lot of your life….I like many endo girls cringe if we feel a sneeze coming on because at times just that is sooo painful it brings tears to my eyes.
Add the distress of infertility to those of us trying and you become an achy emotional mess! But I try to not let it take over. Have to live my life regardless…

S: Wow, you girls are amazing.

Me: Jenny – I read that on your blog the other day and thought that was an excellent way to put it. ((Hugs)) Also, sneezing is cringe worthy, I also have days where I have to tell Johnny he can’t make me laugh because it is so painful… and of course there are also other things that are painful as well. :/

Me: Hey everyone, I’m going to blog this picture and talk some about it (this has been planned for awhile), I was wondering if I could add your comments to my post… either anonymously or with your name and a link to your blog if you have one. I won’t add your comments into the post without your permission… if you don’t mind me doing so let me know how you want to be mentioned (name/no name and link/no link) …
Thanks! 🙂

Jenny I hear ya on the laughing! I’m ok standing or sitting but lying down is when it hurts….
you can add anything you want…comments, name, link…whatever 😀

SonjaHeat and rest, prescription pain meds. Def not doing much at all. It’s pretty much “If I do this, will it cause me more pain in the long run?”
Relaxing def helps too. I try to do my meditation breathing when it gets too bad.
Feel free to use my name/blog/body as you wish Jenny!

(Note, I’m also a Jenny, there are two of us taking part in this discussion)

Maman Auren: Yeah heat does help too. Sometimes ice but ice packs don’t stay as cold for as long as hot packs stay hot. ~ I take vicodin and ibuprofen and naproxen and drink tons of water. It’s a good combination but still, some days (the worst days) all of them don’t touch the pain so it’s a matter of laying in bed and just waiting until it passes, reminding myself it’s good that I’m alive to feel the pain. ~ Standing up and walking around DEFINITELY makes it worse, as does sex (;_;). ~ As far as when it comes… I have about one good week now where I have very little pain (level 3-4), and then the rest of the month is hell, worst from when I ovulate to about three days after I would have started bleeding (I’ve been amennorheic since september).

Maman Auren: Oh yeah and yoga breathing. It doesn’t actually help the pain but it helps with my mindset and stress level.

Me: Good point on the yoga breathing Maman Auren… and reminding me of other ways to help…. I don’t do yoga breathing, but I do start focusing on my breathing. And before I had my last surgery the doctor had a lady in his office who helped me learn guided meditation or something like that (can’t think of the proper name) … visualization? and that helps out a lot too…. even when it doesn’t help the pain it does help me relax.

Sara S…there isn’t much more I can say that the other girls haven’t, except this. As silly as it sounds, so many of us with endo are dealing with infertility as a large part of it, and I can’t tell you how many times I have been at the doctors or the ER and had a pregnant nurse or doctor take care of me. It really sucks and hurts and just reminds me that I can’t have a child and that actually makes the stress worse, which makes the pain worse. It also sucks when they say things like “we have to do a routine pregnancy test,” and I try to lighten the mood by saying something like “yeah, right,” or “ok, sure that’ll happen,” and they look at me like I am nuts and say “oh you just never know,” or “well you know you COULD be.” These things, even though said to be nice or whatever, might as well be a stab in the heart. So what I would say is, if you are ever pregnant, maybe keep that in mind and let someone else take the case. Or even if there is another nurse who is pregnant, offer to take care of it for them….this was while we are in that situation we can focus on feeling better and actually getting to talk to the doctors. Too many times I have left things out or forgotten things because I am too busy trying to not bawl my eyes out at the site of some glowing pregnant nurse. Hope that helps!

Jenny good point Sara…it’s definitely frustrating to hear “well you never know!” I realize I can’t expect a pregnant nurse to know that I’m infertile, but I think that they should NEVER assume a young woman isn’t going through infertility…if you have to do a pregnancy test do it but don’t talk about it to me! This applies to anyone really…I never… See More realized how common it is for people to bring it up…and hearing “oh I know person X who had THAT (meaning endo) and after 5 years she had surgery and got pregnant!” That’s great for her but a) you don’t know how severe her endo was, b) I HAD surgery and mine is to risky to remove from my bowels and c) all I really hear is 5 YEARS!!! THAT’S AN ETERNITY when you live your life in two week intervals!!
but sorry to go off the endo topic…just needed to get that off my chest lol

S: You girls are incredibly awesome. thanks for being so honest. So, If i have a patient come in with endo, would you suggest me asking if she just needs a hug and to cry it out or let her alone to work it out so she doesn’t bawl? or is that more of a personality thing?”

Jenny I think it’s great that you are asking these kinds of questions…as a teacher I’m always excited to see someone who isn’t afraid to ask questions lol
I’d say it’s really a personality thing…best thing is to just ask her what she needs, she’ll likely tell you.

Me: I’d say it’s a personality thing, but if I were in your shoes I’d ask, because for some of us, that hug could mean the dfference between a horrible ER experience and one where we come out still upset from the pain, but a little less upset over all. For an example, there was a nurse when I was going through all the scary heart stuff in 2008 who stood in the room they put us in and talked to us as long as she could (we luckily were one of two patients or something like that) and helped calm us (it was super scary not knowing what, if anything, was wrong with my heart, second ER visit in a couple of days) and keep our mind off of things. It made a huge difference between how we feel about the visit that day and the one earlier in the week. And when we mentioned that visit when we saw her there again a couple of months ago for Johnny she asked how we were doing and what the results had been and what was going on with us.

Sara t really depends I think. I mean there have been times that I would have killed for a shoulder to cry on…and other times that I would have punched anyone who tried to come near me. I think you kinda have to feel the person out to see whether or not it would be a good idea. I know I would be more likely to spill my guts (which seems to help) if a nurse or doctor were to come out and say “I KNOW there is no way that I can possibly understand YOUR case like you do…if there is anything that would help I am here. DO NOT say things like “I know” or “I understand!” Cause, no, you don’t. Even if you have it, even if you have studied it, even if you have known 500 people with it…you don’t know ME and how it affects ME. Every single case is different. There are my endo sisters out there that I can relate with, and even though we talk every day and share details and stuff, there is still, even now, no way we know EXACTLY what the pain is like for each person. Although as far as “too personal” goes….I don’t know about everyone else but once the whole world and their brother has had a peek at everything I have to offer I am not so shy about bawling in front of em! lol!

S: Ok. that’s really good to know. I have a habit of saying, “I know!’ and “I understand!” I try to only say it if I really do or have been in a situation like that, but I’ll start working on getting out of that habit. Good advice!
thanks, girls for being so honest!

Me: If you end up using things like I understand I think you should use it like “I don’t understand what you are going through, but I am listening” or something of that sort.

My cousin also asked that anyone who wants to share info with her let her know.. any advice, dos or don’ts in treating patients, etc. … I’m not putting her info right out here… but please, either leave a comment here or email me (my email address is on my contact info page) and let me know and I’ll pass it on.

I plan to also get pictures of the pages of photos I have of my innards from the surgeries and post them… I need to remember to do it when it’s daylight so the lighting will hopefully be best.
I’m planning to do more posts about endo and awareness throughout the month, hopefully my hands will continue to cooperate. I thought this was a good way to start off the month of awareness.