Female trouble
by Exile From Hysteria
My run with female trouble spans a couple of decades.
Looking back, I see 20 years of missed opportunities. Because endometriosis is difficult to diagnose, and its symptoms mysteriously mimic other diseases or simply refuse to show up on scans, I learned to silently endure the growing pain. Endless tests showed nothing. I was losing hope. I told myself I was stronger than the pulling sensation deep in my belly, that I could will the pain away. And I made it work … until a couple weeks ago.
Lost in prayer
I first was aware that something was awry sometime in my early 20s. I had developed a deep cramp in my lower right abdomen. I tried self-massage, laying on my belly, laying on my back, pushing my fist directly into the pain … nothing stopped the burning ache.
Finally, late one night when I could not stand the pain a moment longer, I drove myself to the hospital. A doctor in the ER palpated my belly, and said he felt a large mass in my abdomen. He asked if my family had a history of intestinal cancer. I said no, but I had no idea. My family didn’t really talk about heirloom ailments.
I was given orders for an abdominal CT scan, and a lower GI. I returned a couple days later for the day of testing. My family all prayed to Father Solanus Casey, a late Catholic priest known for curing sick people who also was under consideration at the time for sainthood.
When the tests returned, doctors told me they found nothing. That the mass had mysteriously disappeared. My family rejoiced and praised Father Solanus. I wondered what had just happened, because the pain in my abdomen continued to burn.
Losing trust
From an early age, I have a history of dealing with doctors who did not believe my pain. When I was in elementary school, I began experiencing chronic stomach aches that continued into high school. I endured enemas and scans and blood work, only to be told by doctors that they could not find a medical cause for my pain. I was referred for counseling. The confusion was so overwhelming. The pain terrified me, and the doctors who I had no choice but to trust told me it was all in my head. As an adult I came to identify those stomach aches as panic attacks, but I never lost my distrust of the medical establishment.
After having laparoscopy surgery five years ago to finally diagnose my endometriosis, my sense of distrust was reinforced. As a followup I went to a specialist because the initial surgery did not get all of the endometriosis. After waiting for 45 minutes, I finally saw the surgeon. For about two minutes. Just long enough for him to tell me I was not a candidate for surgery, that I should just learn to deal with the pain. He simply would not help me.
I burst into tears. Begged him to stay, to please cut me open and take out the pesky endo wrapped dangerously around an artery. He walked out of the exam room, and never came back.
I was devastated. I choked down my tears, and by the time I got to my car, I vowed not to talk of it again. And I didn’t. I never told my gynecologist, my therapist, not even my boyfriend. I became a dutiful soldier, and suffered in silence. I learned to embrace the pain, to modify movement, to avoid activities that required too much walking or standing. I was slowly losing myself to this monster growing within me.
Unwrapping fear
So a week from today, Matt and I meet with the gynecologist to set up my hysterectomy surgery … and I have a real fear she’ll tell me nothing is wrong. That after finally deciding to tell my family and close friends, all of this will all blow up in my face as an overreaction.
So I check my notes. Reassure myself by remembering conversations with my gynecologist. With the nurse. I trace the line of pain from under my right ribcage down deep into my abdomen. Of course this all flies in the face of everything the doctor already has told me. That indeed, I am sick.
Im learning to unwrap the fear, to embrace the pain, to accept the cards dealt to me as not an illusion … but a cold hard truth.
Possibly for the first time in my life.

My ex was a gynecologist. I wish he were still alive so that I could have him talk to you about this. It is a horrible story the way that you have been treated. When he started doing laser surgeries in the local hospital he was almost run out of town by the local physicians because they considered it “witch doctor medicine”- seriously! They did not know how to use the laser so they tried to make him out to be the one who was wrong. The one thing I know about physicians, they are very arrogant, and have a god complex. They do not like to think that they are wrong, so they make you wrong usually, it is easier for their egos. The only thing that saved my ex was that after he performed the town’s first laser appendectomy, the hospital stay was one day instead of one week with the usual scalpel method. And she was back to work in a few days. He really was a pioneer in laser surgery, and a genius in the field. He unfortunately was arrogant and had the god complex as well, but you can’t win them all haha! At least he could back his sh*t up.
He did a lot of these type of surgeries and was really good at using the laser to do what many could not. He however died in a plane crash a couple years ago. If he were still here I would be able to help you, and I want to so badly. Your story breaks my heart. Good luck with everything and I am sending you love and luck! I will check back soon.
I’m so sorry for your loss. Your ex sounds like he was an amazing man. And incredibly talented. You are so right about physicians having a god complex. My boyfriend and I were talking about that exact thing last night! I encountered countess doctors that acted that way. It’s absolutely devastating to be in pain, and not believed. Thank you for hearing me, and offering your support.
Reposting reply for nobodysperfick: I so understand what you mean when you talk about distrust of the medical community. I, too, have not been believed, called crazy, told “not to read too much” about my various conditions, and denied medical treatment. You are sadly not alone in this struggle. I need for you to know that I am here for you however and whenever you might need and that I am sending you warmth and love.
Thanks so much for your kind words. It’s quite a process, talking about this learned quietness. I’m so glad to have your support, and to know you are by my side.
invisible diseases suck. i almost think it would be easier sometimes if i had an oxygen tank trailing behind me. for some days for other people’s benefit, some days for my own. good luck in scheduling. i can say that the surgery does, in fact, reclaim some of your life you have lost to pain. i feel loads better in a physical sense. probably for the first time i can remember. it’s nothing short of amazing. i hope you find the same results. xo
Thanks so much. Gawd, you are so right about having an invisible disease. I can see it in people’s eyes when I complain about being in pain, but appear fine on the outside. Sigh. I really mean it when I say I’m looking forward to the surgery. I appreciate your encouragement.
In sisterhood…
I’m sorry you’re going through this, your story sounds so familiar. I too had to fight for a diagnosis only to be told it was pointless trying to remove my endo. Thankfully I got a 2nd opinion and found a great doctor who is going to treat me. Best of luck with your appointment next week.
Thanks so much! Are you going to have a laproscopy? I had one five years ago and it did provide some relief. Good on you for sticking with it and finding a doctor you can trust. That will mean everything as you move forward in your treatment. Best wishes to you!
thanks for the follow!!
Please look at my blog http://peainapodblog.wordpress.com/ I have suffered with Endometriosis for a very long time and I have started a blog writing about how it has effected my fertility and about my 1st course of IVF. Hope this helps other find the reason for their pain and to help others going through IVF.
Thanks for your support, and for sharing your blog address. Your story is sure to help so many women!
I can relate to your post. Time after time doctors have suggested that its all in my head, that i am imagining it. Remember you are not! You know your body best and it tells you when something isnt right. Trust your instincts with confidence. Well done for speaking out about it and i wish you all the best for your upcoming appointment x
Thanks so much, Carla. Sending you big virtual hugs. This has been an absolutely exhausting journey. I’m crossing my fingers that things soon will improve.
Hi,
I’m sorry you’ve had such a difficult time, this is such a familiar story with Endometriosis it saddens me. I am currently recovering from a Hysterectomy and have no regrets at all, it came about after many years of pain and multiple surgeries. I would consider a few things however before you see the Gynecologist. Is he a Specialist? If you get this surgery done ideally it should by done by a specialist to ensure that any endometriosis is removed thoroughly alongside the Hysterectomy also would it be better to do a full Hysterectomy including the ovaries? Leaving them in can increase the chances of the endo reoccurring, and as a Hysterectomy is not a cure it is possible. I hope that helps
Have you looked at endometriosis.org it has some great information.
Take care and keep in touch with your fellow sufferers through twitter for moral support
Thanks so much for your feedback. And your fabulous questions. Yes, my doctor is a specialist in endometriosis. She expects to remove as much of the endo as possible during the hysterectomy. I have a troublesome patch tangled around an artery, so a specialist surgeon will assist for that portion. At this point, she intends to leave the ovaries, but I have many questions for her when I see her Wednesday. I promise to update, and stay in touch with you and my new Twitter sisters!
[...] is almost here. It will validate what I feared would evaporate into a hypochondriac’s illusion. This is real. I will have a hysterectomy. And tomorrow I will be able to ask all the questions I [...]
[...] a half-hour meeting with my gynecologist, and revisiting my ongoing struggles with endometriosis, I have decided to proceed with a [...]
[...] low — although abdominal procedures like the one I will have rank a bit more dangerous. Still, my neurotic mind goes all sorts of crazy as I imagine the [...]
With all your raw open honesty, i can really feel your pain on many levels. If you have not had the surgery yet, may i toss out a suggestion? They put me on a drug last summer called Lupron Depot-it causes a pysedo menopausal state. I only did one 3 month dose but it did help me. It is not a cure only a treatment but you may want to try it first before doing something as irreversable as a hysterectomy. This is only a suggestion. it helped me, and no i do not represent the drug company or anything…i was given the 3 month injection. You may want to ask about it before doing the surgery….up to you. Peace to you. I hope you find a way to deal with the pain, because i know its horrible. And i also know many dr.s even do not understand. they treat you like a crazy person.
Thanks for your kind suggestion. I am OK with a hysterectomy, as crazy as that sounds. Either way, I would be cut open to scrape out all this scar tissue that binds me. I am ready for the next step.
Also Lupron has shown to shrink adhesions from the endo. Maybe if they gave it to you you and waited six weeks to do the surgery, the outcome may be better. It may be eaiser to remove, especially around an artery. I cannot understand why they did not suggest it first. They said if i wanted to have another Lap, i would need to do another lupron injection. But then my ultrasound came back normal without any ovarian cysts.My hubsand and I have decided to avoid any more female surgery. But thats us. You must do whats right for you. I still want to try to get pregnant-im 38. Also i have heard of women who have done the hysterectomy and still have endo. This is possible because with this disease you can have endo in more spots then just the uterus. i’ve been told i also have it in my bowel. my ownn experience is many drs insist a hysterectomy is your only option. it is not. it is one of course, but there are other options. do not allow anybody to pressure you into an expensive and possibly dangerous surgery. just be careful, some doctors are in it for the money too. the make a lot more doing surgery then giving you an injection.
Yes, I hear you. I totally trust my doctor. I have been with her for nine years, and she did my previous surgery. We have tried many things, and I am OK with this outcome. that doesn’t mean it’s not painful, or that I’m not sad. Because it is and I am. But after researching all of the options, this is the one I chose. It feels right for me.
wishing you the best no matter you choice. Good luck, and i hope you get the outcome you want. Hopefully you will find a pain-free place or yourself in way less pain. hugs and strength to you dear.
((( sexinthekitchensink ))) Thanks for your input. I value your expereince, and insight. Cheers!
I want to say I truly appreciate your words, because you have been there. It means more than you know.
[...] With a history of not being believed (both as a child and as an adult) I trained myself to ignore my discomfort. To the point that nagging abdominal pain recently resulted in a recommendation for a hysterectomy. I took this obvious disregard for my own well-being as a wakeup call. [...]