Today is the sixth day off the ENDOMETRIOSIS AWARENESS MONTH photo challenge and the theme for today is:
PAIN
Definitely not a hard theme to come up with an appropriate picture for those with ENDOMETRIOSIS.
This first picture was taken this morning while I was at home during my break. I needed my baby Tink and there he was, being such a great cuddlebug. He also gets his favorite ear and head scratch in return, with tons of kisses. Today I've been in a lot of pain, a ridiculous amount of pain, but I made it through my work day, now am exhausted to a whole new level.
The following photo is the one I'm using for the theme of the day. I feel it perfectly exemplifies the theme. It was during my hospitalization a few weeks ago. In the middle of the night I was in such an incredible amount of pain. I feel this photo says more about pain than I ever could with writing. I like to take almost daily pictures to have a photo journal of sorts that I can share with my medical professionals when needed.
The following image is something I saw posted in one of my Facebook support groups and it really made me laugh...and most definitely want one of these...wish I could hide away for a while.
I also saw this sidewalk chalk note on Facebook and liked it for the feeling of it. It feels perfect for endometriosis awareness month and I definitely need to see it myself.
I struggle with loving myself while being in so much pain that then can cause anger, at my body and myself. Something I'm working on.
Tomorrow I see my ob/gyn...it is a crucial appointment made even more so, by the pain I've been experiencing almost everyday this week. I posted a brief, yet detailed synopsis of my endo and surgery history on a Facebook group in which a few of the world's leading endo experts belong. I was seeking advice for next step suggestions. This is one response I received, which led me through a variety of emotions and reactions:
Hello Stephanie. Based on your symptoms it sounds like part of your problem was due to your uterus (endometriosis does not result in heavy uterine bleeding but a related condition, adenomyosis, can). Removal of the uterus will have resolved this problem but the big question is the remaining endometriosis.
Endometriosis can affect women in very different ways. The severity of the disease and the symptoms a women experiences can vary widely and may vary over time. Most women have superficial disease only (it only involves the peritoneum, which is a saran like wrap that covers the internal organs). Some women, however, have an invasive form of the disease, which can invade the pelvic organs, including the bowel and bladder. You mention having had rectal bleeding. Was this bleeding cyclical? If you are (or were) experiencing cyclical rectal bleeding this is a sign of invasive bowel disease and would require specialist surgery with the support of a bowel surgeon.
The surgical treatment of endometriosis is very hit and miss and most surgeons do not have the skill to remove all the disease - prognosis and outcomes vary widely between surgeons. Instead most treat endo superficially by burning the tissue (sometimes "ablation" refers to burning > you'd need to clarify the actual technique used by referring to your surgery reports). The problem with burning is that 1) it only burns the surface and often leaves any deeper, underlying disease behind untreated causing symptoms to return over time and 2) it is not suitable for use over the ureters, the bladder and the bowels, so if you have disease in these areas it wouldn't have been treated. Hormone therapies like lupron don't make the disease go away and can bring significant side effects (as you have sadly experienced first hand). Often when surgeries and hormone therapies fail to help, the patient is advised to have her reproductive organs removed. For some this does resolve their pain but for others (especially if deep disease is present) pain may persist because even after menopause, the disease remains in situ. The ovaries are a major source of estrogen, which influences the activity of any endometriosis but endometriosis itself can produce estrogen, so even with the ovaries gone, some women continue to hurt. Another concern with removal of the ovaries are the long term health issues premature menopause can bring.
The best treatment for endometriosis is complete removal of the disease via surgical excision. This is a process that only a few surgeons worldwide are able to do. The most skilled surgeons can manage disease involving the bowels, bladder or anywhere else in the pelvic cavity. Sometimes these surgeries can last hours. Long term follow-up of patients who undergo complete wide excision has revealed that the majority of these patients experience ongoing relief of their pain and the disease rarely recurs. When looking for a good endo surgeon, the key is to find one who offers the surgical removal of all areas of disease via excision rather than burning (refer to the file section for a list of suggested questions to ask a prospective doctor). If you are based in California, you may be interested in considering requesting a free record review and consult with Dr. Cook in Los Gatos (www.vitalhealth.com) and there is Dr. Nezhat in Palo Alto who also offers excision. I don't know of any other excision surgeons in the state.
Another thing you can do is seek feedback on previous surgical reports or surgical photos here in the group. Dr. Redwine regularly annotates women's surgical photos fro them if they post them to the group. He is one of the world's leading endo surgeons (sadly now retired but happily still around helping us women).
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I'm so grateful for this feedback and wisdom to have. I am scared of what the road ahead of me holds but I also KNOW I can't stay in this place, so the fear is a major motivator of self-advocating and action.
For now though, I'm under my comfortable and cozy blankets, wrapped in my cocoon warm sweater, with my previous kitty cuddling.
Thank you all for reading.
Ready to sign off.
~namasté
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