I Will Not Suffer In Silence

Over the past couple of months, I’ve really felt a need to ramp up the info I put on my Living With Endometriosis website, and I’ve pimped it out to a couple of Endometriosis forums. I’ve also started video blogging about Endo.
Too often, I read on the forums the same ignorance, the same old wives’ tales, the same questions… and always people either don’t have an answer or they have the wrong info. I got tired of it. I wanted to share with people the things I know after many years of trying to help my own self in dealing with the Endometriosis.

Today, while searching for facts on how women with Endometriosis are more prone to getting ovarian cysts, I found a link to EndoChick’s blog, and from there, I hit the motherload of Endometriosis bloggers.

I sure am glad I’m on vacation this week, because now I have the time to devote to checking all these blogs out and adding them to the Living With Endometriosis website. I need to restructure the links in the sidebars on that website, and most importantly, I need to take all my journaling I’ve ever done on my own Endometriosis and put it all in one place over on the Living With Endo site. This will entail creating a blog within a blog. I’m going to contact tech support for help on that…

My calling for 2009 apparently is to become even more involved in the Endometriosis community than I am at present. I don’t feel I have a choice in the matter. I am continually being looked to by fellow Endo sufferers now that I’ve shared a bunch of info. I can’t just step down, now. I obviously have a talent for digging up needed info and sharing it in an understandable way. If the goddamned doctors won’t help us, we have to help ourselves. And if we’re all out in the barren winter wasteland wandering around dazed, looking up at the information overload in the heavens, wondering when it will all make sense, then we’re not being helped. Some of us have to step forward and start making sense of it all. Once we start tightening up the bajillion scattered communities out there and all start to be seated under the same tent, speaking the same language, only then will we truly be helping ourselves, advocating for ourselves, demanding better treatment for ourselves, and finding acceptance with the (currently) incurable and debilitating illness we all share.

YAY!!!

#1 I’m feeling better! I have more energy today!

#2 I finally found the portable tabletop washing machine I’ve been after for what seems like years! It’s so hard to find cuz it’s always out of stock or only found in the UK. But today I searched the Interwebs again and voila! I found it back in stock as of last week! WOOOT! IT IS MINE NOW, ALL MINE…

#3 I have been wanting a portable tabletop washer for all the fabric pads I go through each month. I’m sure my husband is tired of being grossed out by me soakin the pads in a bowl and then warshin and wringin em by hand in the bathroom sink. ;)

To all the ladies: If you are not opposed to touching your own ‘issue’, and are into the idea of fabric pads, you should check out the Hag Rags. I’ve never had one fail me yet, and I’ve been using these since 2003. The stitching is tight and durable. She makes overnight (goddess-sized) pads, and pantyliner pads, too!

I started using fabric pads in 2003 after learning that the average store-bought pads are not biodegradable and more to the point, contain dioxins, which are proven to cause cancer and Endometriosis.

Read more about dioxins below:

http://www.endometriosisassn.org/environment.html

http://www.the7thfire.com/health_and_nutrition/asbestos_rayon_dioxin_in_tampons.htm

http://www.naturebotts.co.uk/shop/natracare_feminine_hygiene/info.htm

Earlier today, my question was, “Do the Internets have a play-by-play explanation as to what happens physically when squid pass?”

I was looking for a non-textbook, readable, understandable, palatable explanation for myself and others.

It’s not so easy to come by!!!

After several word combination searches failed to give me what I was looking for, I tried “how a clot passes through cervix” and was directed to WomensHealthLondon.org.uk.
This website states, “When menstrual bleeding is heavy, clotting can also occur. Losing large clots can be extremely upsetting and even painful if they are large because they can cause cramping as they pass through the cervix. There is a simple explanation as to why these large clots are formed. All blood contains a clotting factor. To enable menstrual blood to flow freely from the uterus (womb) and leave your body without clotting, the uterus produces an anti-clotting agent.”

Ok that’s a bit too dumbed down for me. What anti-clotting agent is produced?

I used to know this! argh!

I used the search terms “anti-clotting agent uterus” and it got me nowhere.

I looked back through my old diary – where I had reprinted part of a chapter out of Endometriosis: A Key To Healing Through Nutrition, and I found prostaglandins.

I’m pretty sure that’s the word I’m looking for, so I turned to wikipedia.

But Wikipedia doesn’t dumb it down enough for me when it says that prostaglandins “cause aggregation or disaggregation of platelets”.

So I googled “aggregation of platelets” and got my answer:

“Platelet aggregation: The clumping together of platelets in the blood. Platelet aggregation is part of the sequence of events leading to the formation of a thrombus (clot).” – medterms.com

SO:
Prostaglandins in the uterus are what cause the clumping together of platelets in the blood, and this clumping is what leads to the formation of clots (which I lovingly call squid).

Now let’s go back to WomensHealthLondon.org.uk:

“But if the menstrual loss is heavy, it is possible that the anti-clotting agent will be used up before a period has finished, so that the remaining blood is likely to form clots.
…There are a number of diseases which can cause heavy bleeding…” and Endometriosis is listed as one of them.

And then, going back to the Endometriosis: A Key To Healing Through Nutrition book, it says, “Large blood clots may be prevented when vitamins C and E are used together with evening primrose and fish oils as these all have estrogenic properties, and certain estrogens produce changes in blood clotting.”

I do have these vitamins and supplements in the house, but it is true that I do not take them daily. I forget. I have already started to correct this.

I then found a big ol’ discussion on a popular website for those of us with Endometriosis – endo-resolved.com – wherein she breaks down all one wants to know and more about prostaglandins. Happy reading!

Overall, I’m satisfied with the answers I found to my question, but I’d still like a play-by-play as to what happens physiologically in the uterus and cervix and vagina during the forming of and passing of clots.

The closest I came to that is a website called My Beautiful Cervix. It’s a VERY graphic, NSFW site detailing photos of a woman’s cervix through one month. It’s totally fascinating and informative! If you are interested, you can click here.

Yesterday we had a Christmas dinner date with B’s dad, but I still wasn’t feeling well. I had been on Tylenol 3 all day for the pain.

I told B I could go with him to see his dad, but I’d just hang back and take it easy. That’s when B told me his dad had plans to take us to a restaurant, not do a sit-down dinner at his home.

Oh.

So B told me no way, no how, I was not in any shape to go out to dinner, and to please just stay home. So I did. I read books and played Shape By Shape and slept.

I was feeling better by last night, and went to bed without having to take pain meds.

Woke up this morning also feeling fine, but I had a gut feeling that it wouldn’t last.

I roused B and asked him to come with me to my first homeopathy appointment today. I told him I’d drive there and if the pain hit, he could drive us home.

I was fine til about halfway through the hour-and-a-half session, and then the uterine twinges started up again.
I felt low level nausea and some weakness in my legs. That’s always a sign that bad pain is to follow.

The homeopathy appointment itself was just an introductory thing – we went through my medical history, family stuff, psychological stuff, etc. She made notes and listened like a shrink would do, and offered some feedback here and there. At the end, she told me she’d like me to take Miralax once a day for the constipation (I am always constipated but it’s worse during menses, and even worse still once the pain meds come back into play). She also prescribed some cuttlefish ink, which I am to take two of, twice daily until the pain of this cycle ends. Then I take one twice a day until the pain starts up again for the next cycle, at which point I go back to taking two twice daily.

I will check back in with the homeopathy doctor again at the end of February, and she will introduce the next phase of my treatment.

I decided to drive us home after the appointment cuz I was not anywhere near debilitating pain, yet. On the way home, I got a craving for a coney dog, so we were on our way there when we saw two of our friends, C & J, standing on the side of a street in front of a local shop. I pulled over, got out of the car to go say hi to them, and WOOSH. The flow and pain began.

But still I walked over, hugged everyone (J’s sister and their mom came out of the shop and caught up with us), and we all chatted for a bit. I did a little shifty dance, not unlike the ‘pee dance’ because of the pain, and eventually we all parted ways and B and I headed on to a hotdog place in town (the Pampered Pup, which I keep calling the Pampered Poop).

When I got out of the car again, I got a second woosh and my legs were pretty shakey at this point. I walked slowly, cautiously, not sure I was gonna make it. Each step now brought full pelvic pain, centered low and in front, above the pubic bone.

We got our hotdogs, got back to the car, got back to the house, and I staggered to the bathroom.

It’s squid (clot) city right now :(

I had two bathroom runs. I ate the dog even though I still have the pain-related nausea. I also have low back pain now, and moderate fatigue from all the pain again.

Do the Internets have a play-by-play explanation as to what happens physically when squid pass? I will look it up.

I successfully made cupcakes and brownies, and then we went to a potluck a block away and I was able to stay for several hours! Yay! I took it very slow and sat a lot and was high on Tylenol 3, but did very well. I only had a couple moments where I thought the pain was coming back stronger, but taking another dose of 600mg Ibuprofen helped, and not exerting myself definitely helped. Not at all like the pain I was in last night. Yay! This makes me happy. Being with friends made me happy.
Now for footed jammies and teevee.

Holy crap! My husband’s friend just got me the following booklet for Xmess:
Is Endometriosis Potentially Malignant: Third Japan Conference on Endometriosis, Kanagawa, Japan, April 2000: Proceedings (Gynecologic and Obstetric Investigation)
by H. Hoshiai (Editor), et al.

I added this to my Amazon wishlist back on December 17th after searching Google news for the latest on Endometriosis, and a link to that conference came up. I was mad that the information, now 8 years old, was not freely available on the web. So I tossed it on my Amazon wishlist.

I can’t wait to pore over this and share the info with Endometriosis forums!

The reason such valuable information is not more widely spoken about is that, according to the Endometriosis Association, there are only so many researchers and scientists devoted to working on diseases associated with malignancy (cancers) and immunological disorders…AIDS being the one which takes up most scientists’ and researchers’ time… so there’s noone and no money left to devote to other pressing illnesses, such as Endometriosis. So articles like the one above are pushed into the background to fade away.
This is unacceptable! I want to be part of the growing number of people who keep this stuff fresh and push for it to continually be looked at!!

And that’s all the rant I have in me now with the pain and medication… but rest assured, there’s more to come!

I’m back to having to take Tylenol 3 to cope with the pain. :(
I hadn’t had any since yesterday afternoon.

The bleeding ramped up yesterday afternoon, and without realising it, I bled through my thick fabric pad and through my panties. At bedtime, I put on a large overnight pad, and ended up bleeding through that, too. And this was one of the store-bought pads.

This morning and all day so far, I’ve been bleeding heavily, looking pale, and feeling shakey. I was shakey last night too, to the point where I couldn’t even carry out the glass dishes I brought in for a potluck we’d attended, without fear of dropping them.

The pain set in full force about 40 minutes ago. I’m on Tylenol 3 again as I said. Good thing I’m off work for the holidays. I don’t return to work until January 5th. Less guilt that way if I’m missing work due to someone else’s schedule and not my pain issues.

I’ve been reading a book I got recently – it’s the best book yet on Endometriosis, because it tackles the emotional side of having Endo.

The book is called Coping with Endometriosis: Sound, Compassionate Advice for Alleviating the Challenges of This Chronic Disorder, by Robert Phillips and Glenda Motta.

In the book, I found the Mankoski Pain Scale, which I’d like to share.

In the past year, I’ve had my GYN or the E.R. ask me to rate my pain on a scale of 1 – 10, but they never explain to me what each number of the scale stands for.

So I’m left, in a state of debilitating pain, to try to remember what each number on the pain scale represents!!! And often I under-rate my pain, and am therefore not treated accordingly. :(

So I wanted to put the pain scale here for reference, and I’ve printed it out to keep it with me at all times, like I do for my emergency contact card and my pain meds.

Mankoski Pain Scale

0 – Pain free

1 – Very minor annoyance – occasional minor twinges.

2 – Minor annoyance – occasional strong twinges.

3 – Annoying enough to be distracting.

4 – Can be ignored if you are really involved in your work, but still distracting.

5 – Can’t be ignored for more than 30 minutes.

6 – Can’t be ignored for any length of time, but you can still go to work and participate in social activities.

7 – Makes it difficult to concentrate, interferes with sleep. You can still function with effort.

8 – Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 – Unable to speak. Crying out or moaning uncontrollably – near delirium.

10 – Unconscious. Pain makes you pass out.

Right now, my pain rates as 7.5.

Tylenol 3 consumed first thing this morning around 8:45am.

Just wore off.

Taking 800mg Ibuprofen and half a Tylenol 3 for the next round…

In the meantime, the drugs have allowed me to be mobile this morning. :)

I got a miniStack for xmess!!!

Officially bedridden now.