Not doing well emotionally

First the catchup stuff:

June 20 was the worst pain day for shoulder, back and neck strain, then it became at least bearable for the rest of the week in through today.

June 22 – I was at Costco around 8pm when suddenly I was doubled over with right side stabbing ovarian pain. The intermittent stabbing lasted for over an hour and made me double over several times. It took the breath away from me. I did not medicate though. Also, I had low back pain all day – I felt very stiff.

I’d like to mention that I’ve also been having diarrhea after meals, lately. Even and especially with safe foods. It could be stress from everything. I dunno. I just need to note it, because normally I’m a very constipated person. I wish I could remember when it started, but it’s been going on for at least two weeks – usually one or two episodes a day.

Within the past five days, I have resumed taking two to four calcium/magnesium pills per day. This of course is not helping with the diarrhea.

June 23 – Yesterday – I was still experiencing left and right side ovarian stabby pain. It was still intermittent. My lower back was hurting a lot. It was hard to straighten after sitting or bending. Still having diarrhea. Also, I had my followup appointment with my new GYN (Giudice), and we went over the MRI results.

The appointment was about a half hour and was rushed because my GYN needed to be on a plane to some conference. I was originally scheduled to come in at 11am, then the day before, it was moved to 10am, then to 9am.

She quickly went over the MRI results with me and hit the big point – adenomyosis. She told me that based on the image, there is not any thickening of the inner uterine walls, so that rules out adenomyosis. YAY!

She told me I still have the chocolate cyst on my ovary, and said it is indeed an endometrioma, but she totally acted nonchalant about it, and said we’d continue to just watch it. She said she has no intention of going in and doing surgery just to remove that chocolate cyst, and she doesn’t see why I need another endometriosis surgery, either. She urged me to keep trying physical therapy and alternative health remedies and pain management instead of going the other three routes: hormone therapy, seizure medication, surgery. She referred me to the Osher Center for Integrative Medicine, across the street from her UCSF campus. I went and checked it out – they have a bunch of services I can get where I live and not stress the hell out by being stuck in traffic across the Bay Bridge, and then navigating the crazed lunatic streets of San Francisco. Thanks, I’ll pass on your lovely center.

I got home yesterday afternoon and before scanning my MRI results into the computer, I read over the report.

This is where the emotional wall collapsed.

The GYN didn’t think it necessary to mention that the chocolate cyst on my ovary GREW by .5cm within 36 days. I wasn’t sure how fast or slow endometriomas can grow, so I looked it up and it seems that endometriomas can grow very fast within a short period of time. In that regard, I think .5cm might be considered slow growth.

Fast or slow – it doesn’t matter – the sucker is growing.

I’m not used to dealing with an endometrioma. I have experience with ovarian cysts. This is new territory for me. It’s scary.

The GYN also didn’t find it necessary to tell me that while I don’t have adenomyosis, I DO have several small cysts in the liver, one small cyst in the right kidney, and several cysts covering my cervix.

WELL. I had a brush with high liver enzymes in 2008, and all the Tylenol 3 I consume takes a toll on my liver and kidneys, doesn’t it? I have been experiencing nausea and left flank pain well above the ovary ongoing throughout this month. I have been having diarrhea. I have had ongoing elevated temperature, reaching as high as 99.9°F.
All this time I attributed it to the ovarian cyst, but could it be from the liver cysts?

On top of all that, I have a recent history of cervicitis, and well, my cervix is everted, so why not add some cysts?

I looked it up and found that cysts in the liver and kidneys are not caused by Tylenol or medication, but in fact are often congenital and coincide with autoimmune disease.

Guess who has autoimmune disease?

I called the GYN office back and asked for clarification of the MRI report. Then I called up the Qigong practitioner I thought I wasn’t going to see anymore, and left a message for her. Then I called my local doctor’s office and got an appointment for today.

The GYN office called back after hours, bless their hearts, and the GYN’s assistant told me that the cysts are all nothing to worry about. She told me to follow up with my primary care doctor if I wanted to, though.

Today I did just that, and the primary doctor (Fredian) called up UCSF and spoke with a hepatologist in radiology, who looked at my MRI report, and told my doctor that the cysts in the liver and kidney are nothing to worry about, that they’re so small they won’t cause trouble or show up on a regular ultrasound.

However, Dr. Fredian wanted me to stop referring to the thing on my ovary as an ovarian cyst. She told me it’s much more than that – it has some solidity to it. Despite the common name ‘chocolate cyst’, this is actually a growing MASS on my ovary, and it should be closely watched. She told me the difference between this mass and a ‘regular’ ovarian cyst is that this cannot reabsorb.

This of course did not help my emotional state to make the conscious switch from the idea of a benign cyst to a nefarious growth.

The doctor concluded our appointment, congratulated me on not having adenomyosis, and sent me on my way.

My Qigong practitioner called me back today, and I went over the MRI report with her. She got quiet and pondered her words. She sounded cautious. She said I need to do a cleanse ASAP. She encouraged me to keep seeing the acupuncturist, but to try to go every week. She sounded urgent in addressing my health. This added to my anxiety. I got all apologetic and confessional by saying I hadn’t been eating right for a long time. Her voice still soft, she told me something like, “it’s much more than diet, you can’t feel bad about that.” Again my anxiety. Ugh.

But I came home and resumed my homework – I took another teacher training class last week and I’m still trying to finish the binder from that class this week. Yet another class begins this coming Monday.

Later this evening, I had my first acupuncture visit since about May 6th, and I showed my acupuncturist the MRI report, too. I told her of my fears of the liver and kidney cysts, despite what my GYN and primary care doctor are saying. I have all these symptoms – what if it’s connected?
My acupuncturist says it all IS connected, and that she will continue working on me to keep the blood moving (or as I choose to describe it, to keep flushing the lymphatic system). She’d like to see me every 2 weeks if I can swing it, but says every week is not necessary.
She also seemed to get very quiet after reading my MRI report, and also seemed very careful in choosing her words. I’m just a ball of anxiety over this.
The acupuncturist left the room and I closed my eyes to rest while the needles did their thing. The first visual image I got upon closing my eyes was a rectangular hole in the ground, decorated on the outside edges with a beautiful rectangular autumn leaf arrangement. My eyes welled with tears and I threw open my eyes and stared at the ceiling to try to get ahold of myself.

Funerals! Are you serious? Get a grip, woman!!!

The tears were perhaps a release of pent up emotions, and the acupuncture opening channels.
I’d spent the day matter of fact, blunt, even aggressive at times in demeanor. By early afternoon, I likened myself to Starbuck from the 2004 remake of Battlestar Galactica.

But by the time I was in acupuncture session, I was ready to sob.

I got home and tried to resume my homework, but the tears came. I sat there working at the desk as the tears just streamed down my face. I couldn’t stop them, and I refused to allow myself the time to just cry like a baby, because my husband was home, and I hate crying in front of anyone, even him.

I made myself a horrible vodka drink and sipped at it. It was so bitter, it helped stop the crying, heh.

I told you I wouldn’t be handling things well if the MRI report contained anything other than my usual endo issues.

The Waiting Game (or, How Ovarian Cysts Mess With One’s Menstrual Cycle)

George is two days late. He was due Sunday. Because I always count the due date as Day 1, I’m going to say he’s actually three days late.

Last month, I was diagnosed with a .9cm chocolate cyst (endometrioma) on the right ovary.

A month before that, I was sure I’d had an ovarian cyst which ruptured.

Either that cyst did not rupture and continued to grow from March to April, and then from April to May, or I’ve developed a new ovarian cyst since April.

In either case, my reality is that I do have an ovarian cyst, which I can tell you about with my own authority and experience, and I can back it up with the ultrasound I had on April 21.

Before March 2010, the last ovarian cyst that I really felt and had complications with was in November/December, 2008. I suspected an ovarian cyst in October 2009, but I didn’t follow up on it in my journal, so I dunno if I had a cyst or not.

So my own authority and experience this time around matches up with my symptoms in November/December 2008 as well as my symptoms in March, 2010: during the current cycle, I was supposed to begin menstruating on Sunday, May 9, but george is nowhere to be seen. Instead, I began experiencing stabby right side ovarian pain on April 30, which has lasted to the present day.

Going back through my calender, I noted:

Monday, May 3 – left side ovarian pain started.

Tuesday, May 4, – sharp low uterine, upper vaginal pain – intermittent. Heavy fatigue throughout the day. Full uterine and ovarian (both sides) pain at a dull constant level throughout the day, rising to 4 at times on the pain scale. Took 400mg Ibuprofen at 8pm, took 400mg more at 9:30pm.

Wednesday, May 5 – Fatigue, achey, intermittent uterine pain

Thursday, May 6 – sharp pelvic pain – stabbing left ovarian, sharp intermittent low uterine pain. Uterine pain became constant by 2pm. Large hip circles earlier that morning to manage the pain were not successful.

Friday, May 7 – Constant low uterine cramps. Highly emotional all day, turning to high irritability by nightfall. Had food reaction – I suspect either the ‘smoked’ cheddar/mozz cheese or the marinara sauce on my gluten-free pizza.

Saturday, May 8 – Constant low grade uterine and ovarian pain. On ibu all day – consumed over 2,000mg. Still quite irritable.

Sunday, May 9 – George is a no-show. Moderate low back pain, on ibuprofen again but only took 800mg total and toughed out the pain. intermittent continued uterine and ovarian cramps.

Monday, May 10 – I didn’t record anything that day because I was out of the house running lots of errands after work til nearly bedtime to prepare for upcoming Michigan trip.

Tuesday (today) May 11 – Pinching/stabbing right side ovarian pain. Took 600mg ibu first thing in the morning, 600mg ibu around 2pm. Heavy fatigue all day. Mild to moderate intermittent uterine and right side only ovarian pain all day.

(side note: I’ve tried my gluten-free pizzas several times since May 7 and the only constant is the tomato sauce – all other ingredients have been changed up – so I bet my tomato allergy has caught up with me again after being dormant for years…just like my citrus allergy caught up with me again last October).

(another side note: I’ve only been to the gym twice this month, and I bicycled five times this month, with the last time being a week ago – May 4)

The ovarian pain, the low back pain, the fatigue – all of that is part of my usual pre-menstrual pain, but I also had vaginal pain and really tender/painful breasts and nipples this cycle, and THAT for me smacks of ovarian cyst.
Given that I knew I had a cyst in March, and a cyst was found via ultrasound in April, it’s pretty much confirmed for me that the reason why my period is late is that the cyst is still growing and causing problems.
I think the longest my period has been late during an ovarian cyst flare has been three days. So george should therefore be here by tonight or tomorrow.

Knowing that helps me not to freak out so much, cuz by last night I was freaking out in the most irrational ways:

  • OMG what did my acupuncturist do to me last Thursday – she did so good that not only do I not have massive pain, I am not bleeding at all!

I’m much calmer today after reading up on ovarian cysts again, and going back through my journal entries on my previous cysts. I’m falling more into acceptance with what is happening, and adopting the ‘This too shall pass’ mentality.
I’m still pissed off that my weekend plans are likely ruined, but the truth is that these things can easily be rescheduled before I fly back to California.

I’ve never flown on an airplane during a my period, and my period is ALWAYS a nightmare of pain, so this should be interesting. :(

Visit to a new surgeon today

Today I saw Dr. Linda Giudice at UCSF – the same hospital where I had my diagnostic laparoscopy three years ago.

She is every bit the rock star that the World Endometriosis Foundation and brag her to be. :)

A friend of mine says she told me awhile ago I should go see this doctor. I believe her, and I am kicking myself for not forwarding the email convo with her to a text document I keep with all my endometriosis files, or forwarding the mail to my Living With Endometriosis email account. I really have to get better at sending copies of convos in other sources to myself in an endo-only location where I’ll be sure to see it again and follow up. Part of the issue too is that Dr. Giudice is in San Francisco, and I was certain I could find a good reproductive endocrinologist/surgeon in the East Bay. My stubbornness cost me over a year, and continued let-downs via other doctors.

Learn and move on…

I guess I can say I can’t be curious about those other doctors now, eh?

So, the details of the visit:

I was weighed, measured, BP and pulse taken, and an intake nurse met with me to begin my medical history. Dr. Giudice walked in and said normally she would let the intake nurse do all this but I’d been made to wait 10 minutes already, so she was going to spare me that. I lit up like a light when she walked in and enthusiastically smiled and shook her hand. I couldn’t contain my excitement, hee hee.

We went over my history and Dr. Giudice was totally on the ball, receptive to the medical paperwork I had to offer, asking the basic questions about where my pain is, what it feels like, when the pain happens during each cycle, and all that. She asked what I’d tried for the pain, if I’d try further hormonal treatments, if I’d try the Mirena IUD (no to ANY and ALL further hormonal treatments). She didn’t put up any arguments to my ‘no’ answers.

She had a look at my surgery report and said it looked like stage I endometriosis. It felt like a scene in a movie where a record player needle is suddenly ripped from the playing record, heh, and I told the doctor that per my follow-up interview with my surgeon (and handed her the hardcopy of said interview, as well as color photos of the surgery), I think I really am at moderate or stage III endometriosis.

Dr. Giudice had a look at the interview notes and the color photos and exclaimed her thanks to me – that those made the picture A LOT more clear – and she agreed, yes, I do have moderate endo.

Now that I think about it , endo is endo, if I have it, it shouldn’t matter the stage, but for some reason there in the office, I really needed her to really take a look at everything I had. I dunno, would I feel like I’d been telling lies if I was at a different stage than reality dictated? Why does it matter the stage if the pain itself is real?? Why does it matter the stage if two different surgeons can’t agree on what stage it is, but can agree that it is endometriosis?
I mean, seriously. But there I was, afraid I might not be helped perhaps, if I only had stage I endo.

I told Dr. Giudice how I’d met with Dr. Streitfeld and he said based upon my history, my surgery report and the fact that I did not have pain relief from the endo, that I might have adenomyosis. She said it was a possibility, indeed (adenomyosis is where some inner uterine lining is found within the middle layer – the muscular uterine wall. The inner lining has different cells than the middle or muscular layer, and should therefore not be in the middle layer at all. Rogue endometrial growth in this middle layer is very very hard to treat, so said Dr. Streitfeld and Dr. Giudice. In fact, Dr. Streitfeld had said that the only way to cure someone of adenomyosis is to take the uterus out).

Dr. Giudice also told me that based on me telling her that I get rectal bleeding about a week before my period each month, and that I’m always constipated and bowel movements are very painful during menstruation, that it’s quite possible that I have “rectal-vaginal involvement” where the endometriosis is concerned. She says it’s unfortunately very easy to miss during a laparoscopy, and that I should get an MRI.

Dr. Giudice asked if I had pain radiating down my legs, and if I am painfully sensitive to the touch anywhere else on my body. I told her how I get pain radiating down my tops of my legs and inner thighs down to my knees every month up to a week before menses, and said I am only sensitive to touch on my legs in general, but I am sure that with the legs, it’s due to overloaded liver and kidneys.

Dr. Giudice began telling me about nerve inflammation, and illustrated how endometriosis brings its own nerve bundles with it and attaches to existing nerve clusters belonging to other organs, and that’s why we get such radiating pain. She said that even if there is no actual endometriosis on a particular part of the body, the fact that an endo nerve sac had joined up with an existing nerve line – that’s what is triggering the pain on down the line.

My jaw dropped. I looked at the nerve clusters she was drawing for me, and exclaimed something like, “That’s exactly what Dr. Ian Fraser talked about a year ago, and there was no publicity on his findings! I JUST saw this for the first time recently!”

Dr. Giudice looked surprised, then smiled, and said she got to meet with Dr. Fraser in the past three months.

OH MY GOD. THAT IS SO AWESOME! So they’re on the same page! She agrees with his findings or is at least intrigued by his findings and is willing to cite his work to her patients. There is hope. I told her that I’d written to him, that he’d apologised to me, saying ‘we’re not there yet’ – i.e. he has a lot of work ahead of him. I told Dr. Giudice that I told Dr. Fraser I’ll wait and I’m happy to give him all the P.R. he needs. She smiled and even giggled at that.

We also discussed the ideas that some doctors are pushing – neuropathic pain and muscle memory. “Kind of like phantom limb”, said Dr. Giudice. She wanted to know how I felt about seeing a physical therapist and also trying out antidepressants to try to reprogram the brain from continually saying, “OMGWTF I’M IN PAIN OW MAKE IT STOP”.

I told her I’m on board with the physical therapy and the idea of muscle memory. I told her how I try to keep things loose through the wide hip circle belly dance move, and that a masseuse I had in the past also knows a lot from experience and training about muscle memory vs. endometriosis.

But the antidepressants, I told her, I’m not so sure about pursuing that right now. She nodded and said it’s not really her area, anyway – she just wanted to put it out there.

We then went to the exam room – I consented to a transvaginal ultrasound and a pelvic exam, and mentioned I’d been having right side ovarian pain for at least the last two menstrual cycles, and was worried about another ovarian cyst.

Dr. Giudice let me watch the monitor and explained everything to me as she worked. Her speech cadence and body language informed me that my uterus does not look normal to her, and she described it verbally and on the ultrasound report as “globular”.
I had warned her before putting the scope in me that I have a tilted uterus and to go slow, and she did the best she could. She confirmed for me that my uterus is tilted backward a bit (retroverted), and said that with the uterus being “globular” and the cervix not being where it is supposed to be, that it could account for some of my pain, and more importantly, it is commonly seen in women with adenomyosis. :(

Dr. Giudice moved on to my ovaries, starting with the right side, and immediately found a black spot. She marked it on the screen and said it appears to be a 0.9cm endometrioma, a.k.a. chocolate cyst on the ovary.

She spotted two follicles on the right ovary; one being the endometrioma, and moved to the left ovary. The left ovary contains four follicles and no cysts or endometriomas. Dr. Giudice looked puzzled and asked me my age. When I told her I am 38, her face relaxed and she said it made sense, then. She thought I was younger, and now it made sense – she said that with age, women produce less eggs, and she told me she is seeing a “diminished ovarian follicle reserve”. She was quick to add, “I’m not saying you’re going into menopause tomorrow…” and I told her that’s okay, it may sound aweful but I’m really looking forward to menopause in the hopes that it burns the endometriosis out
(during menopause, there is a severe lack of estrogen being produced by the body. Endometriosis needs estrogen to thrive and grow).
Dr. Giudice nodded emphatically at my hopes.

She then said she’d like to do a rectal exam, because of what we’d talked about earlier with the whole possible rectal-vaginal endo issue. I winced and groaned. My legs stiffened even tighter right there in the stirrups. It had already been painful enough to get the transvaginal ultrasound and the pelvic exam, because I’m so tight, small and tender in there to begin with. I warned the doctor that I have painful hemorrhoids and to please be as gentle as possible. I consented to the rectal exam because I know why she needs it, and I have known for years that I have rectal-vaginal involvement, even if the first surgery missed it. And eight months ago, Dr. Kate O’Hanlan also insisted upon a rectal exam for the very same reason. Of course, Dr. Giudice asked me FIRST and didn’t proceed until I gave her permission.

Sadly, the end result was the same as last time – I got hot, shaky, weak, quite nauseous, and totally emotionally rattled.

Dr. Giudice finished up her exam, told me an MRI was definitely warranted, and took off her gloves to come stand by my side and hold my hand because she saw me gripping my fists and clenching my teeth. A tear spilled from my left eye. I began babbling about how I’ve had these stupid hemorrhoids since college, when there was a lot going on in my life; my brother was facing prison time, I got knocked up and chose not to keep it and was told by my doctor I’d probably miscarry anyway…plus a full college load to deal with. Dr. G reminded me to breathe, and asked if I’d ever tried psychiatric counseling. I told her oh yes, a few times, now. I told her I’d seek it again.

The doctor and her assistant left me alone in the room to take as long as I needed to collect myself. A nurse came in to ask if I needed a pad, a drink of water, or anything. Once everyone left, I began sobbing. I cried and cried. I shook like a leaf.

I wondered, what was I upset about, aside from a painful rectal exam? Is that all it took to break me?

Or is it the fact that I now have to consider adenomyosis and rectal-vaginal endometriosis on top of my original endo diagnosis? Or that rectal exams seem to be part of the package, now? Or that even Dr. G admits to not being able to really do much for me, but she’s trying and she cares? Or am I having a problem knowing consciously that I’m getting old and that due to decreased egg output, menopause will start in a few years? Or, hmmm, am I really beginning to wonder if I should *gasp* have children before my well dries up?!
Seriously, I am a confused bundle of emotions right now. Not being able to pin exactly what was making me THAT upset, especially when I didn’t sob *during* my last rectal exam, made it all the more necessary that I just shrug and go with it, and let the tears pour forth.

I needed ten or more minutes on top of that in the waiting room to collect myself. The right side ovarian pain had set in again, and I took 600mg Ibuprofen and washed it down with the nice warm water that the nurse had given me. Warm liquids good, cold liquids bad where pelvic pain is concerned.

I called my husband the moment I got back to my car, to tell him how it all went.

I called work the moment I got back into my town at 1pm, and took the rest of the day off.

And it wasn’t until 6pm tonight that I was able to start journaling about my doctor’s visit.

And only now, at 10:55pm, I am finally able to finish my journal about my experience today.

*big sigh*

Hopefully I’ll be able to sleep tonight.

I am immensely, immensely happy to have finally sought out Dr. Giudice. She was there the whole time – referred by a friend even – and I finally found my way to her.

I have a lead for a physical therapist (my last GYN gave me some leads but they didn’t work out – scheduling/timing problems I think), and I have a script to get an expensive MRI, and all of this has to be done in the next two months, during which time I’m also shelling out money for a visit back to Michigan (it’s been six years since I’ve been home), and also shelling out money for school (to get my Montessori head teacher degree).

But it has to happen this way.

And after that, probably another surgery. We’ll see.

I have to stay brave. I still have lots of options to try out. I haven’t exercised everything, yet.

I’m kinda terrified of coming to the end of all available options, including menopause, with no pain relief. The idea of having gone through 24 years and having 20+ years to go with this pain if nothing continues to work – yeah I think that’s the crux of my emotions right there.