Endometriosis II

Part Two of My Experience With Endo

31 December 2018

Today marks 3 months and 25 days since my surgery. I had my 6 week follow-up today.

No, you read that right.

The unfortunate reality of all hospitals, even private ones, is a lot happens in them and sometimes things don’t happen as quickly as they say they’ll happen and are even less likely to happen in a timeframe which you deem acceptable. My advice is to politely hurry things along if you feel the need to, call, email, turn up. Oftentimes you have to take an active role in your own medical care. This time I was happy to wait. My recovery, albeit painfully slow, has been relatively uneventful. I was happy for things to take their course.

My doctor today was fantastic, she wasn’t the surgeon who performed my laparoscopy but she was exactly what I needed. A pregnant endometriosis sufferer. I felt the worry that was stiffening my neck and rolling my shoulders lift when she referred to sufferers as “we” and “us”, she got it. She went back over exactly what happened during my surgery, I’ve included that below for you to have a sticky-beak. She also gave me a prescription for Dienogest because the Levlen that I took a month after my surgery altered my mental state so severely I couldn’t even remember why I was attracted to my boyfriend. Currently I’m not on any contraceptive or hormonal medication, and I feel pretty great. I will get the prescription for Dienogest filled because it seems like it might be the way to go, but I’m still researching the risks and benefits.

Procedure Notes:

-Cervix and vagina normal save for stenosed cervix
-Uterus acutely AV NS fixed cystic mass on left side
-Uterus normal in size and appearance
-Bilateral Fallopian tubes normal
-Left ovarian endometrioma 7cm diameter with multiple separations, chocolate fluid inside
-Left ovary stuck to pelvic side wall
-Haemorrhage into cyst and cyst rupture with ~100mls blood loss in POD
-Right ovary normal
-Bowel adhesions left pelvic side wall
-Extensive endometriosis involving UV fold, POD, peritoneum pelvic side walls and superficially over bowel
-Endometriotic nodules in POD and large one involving right uterosacral ligament and overlying right ureter
-Liver and gall bladder normal
-No perihepatic adhesions
-Endometriosis superficially involving the under surface of the diaphragm

Treatment
-EUA
-Laparoscopic excision of severe endometriosis
-laparoscopic left ovarian cystectomy
-Adhesiolysis

I read through these details in the weeks after my surgery, not to mention the surgeon came to my bedside hours after my operation and explained everything to me in detail, I think. I forgot just about all of it, including the severity of the surgery and the extent of my endometriosis — however, I will never forget the term “chocolate cyst”. You can Google that if you like, if you fancy having chocolate pudding ruined for you for life.

The doctor told me that I am a rare case where the extent of my symptoms matched pretty well with the level of disease present inside me. A lot of the time women will feel much worse or much better than the state of their insides would have you believe. I felt validated after hearing that, even though I’d have no reason not to feel that way if that wasn’t the case. Whether I have endometriosis or not, if I have pain then validity shouldn’t come into the equation. The very existence of pain is in my head, so for people to tell me that pain is in my head is ridiculous, of course it is, that’s generally how the concept of pain works.

I wouldn’t even say it’s pain. It is more like being momentarily possessed. I used to think I had a tremendously high pain threshold, tattoos don’t hurt, I’m in pain from arthritis nearly all the time but rarely think about it, I had my appendix almost burst and I was more upset about needing to vomit than the pain. The cyst on my ovary changed my perception of pain. I’m far more sensitive in some ways, maybe insensitive in others. As soon as I get a twinge of abdominal pain I can feel tears welling up, like an abused animal hearing a loud sound, I cower. Anything but that pain again, please. My whole body revolts. My shoulders, back, neck, chest, hips, groin; everything tightens in fear of that vehement agony. Really I haven’t even had the pain again since my operation, I think I’m suffering from some level of psychosomatic body pain associated with the trauma of going through those previous pain events. Not much of it was making sense to me, I’d had an over-the-phone consult with the assigned gynaecologist physiotherapist and she was fairly satisfied that I was doing well enough not to warrant a physical appointment. I could pee, poop, have sex, almost walk around the shops without feeling exhausted, I could bend down to tie my shoes, even. Upon relaying that information to the doctor I saw today apparently there is no situation in this case that doesn’t warrant a physical check-up. The doctor made a referral back to the gyno-phys, perhaps one a little more qualified, so I could have a physical examination and check-up. Great! At least I thought it was great, until the doctor informed me that during this appointment the gynaecologist will insert their fingers into my vagina to massage the muscle and to test my vaginal strength. Super looking forward to being asked to tense my vagina around the gyno’s fingers. I was just thinking how I was running out of things to talk to my therapist about anyway.

You might be asking your self things such as “Why the hell does a 30 year old with a pussy of steel need to have her vaginal muscles massaged and vaginal strength tested?” or “What the actual fuck does this have to do with endometriosis?” Let me tell you. Since my surgery I’ve had odd pain in and around my uterus, and I’ve had pain episodes that mimicked those I had before my surgery, during the last few I decided to try something different. Instead of hitting the ibuprofen straight away I noticed that my body was tightly contorted during each of these episodes, so I decided to try focusing on the area that was in pain and trying to relax those muscles around the area. It worked. The pain disappeared instantly. The physiotherapist is going to help me hone this so I can do it more effectively, and for someone who has been doing pelvic floor exercises every day since my surgery my vaginal walls are probably too tight. My doctor asked me why I’ve been so militant about my Kegels and I told her that my physiotherapist who saw me in hospital directly after my surgery said I must do them every day. My doctor then explained that for someone like me who has no kids, no incontinence problems, pelvic floor exercises are of little to no use. I used this as an opportunity to ask about crystal eggs, or ‘yoni eggs’ and their validity, her opinion was not only that they aren’t effective tools for strengthening your vagina but that because the surface of natural stone, no matter how polished, will have microscopic pores and fractures they’re impossible to sterilise. She reiterated the point that my goal shouldn’t be strengthening my vagina but learning how to relax it instead.

My doctor recommended that I join the endo support group online. I deeply appreciated that she went this extra mile, even pulling out a card from her purse to give me. I won’t be rejoining Facebook just for a support group, I like researching the disease, and I have friends and family who have the disease, that’s enough for me. I highly recommend finding your network though, whether it’s online, offline, in books, in meetings, whatever works. Even keeping an endo journal will help.

I’m frustrated by the reality that I have no option but to take hormones to manage the endometriosis. This has replaced my previous concern that having the surgery would result in more endo, according to my doctor I had my endometriosis excised instead of just burned out so the chances of that happening are lessened. I’ve really enjoyed not being on the pill, I love ovulating, I love bleeding regularly. I really want to just give the finger to medication entirely, and maybe I will. I fear I will regret that very badly. The thing with endometriosis is no course of action is guaranteed to result in a positive outcome. You can use the mirena, you can try to stay pregnant as long as possible throughout your fertility, you can be on the pill, you can be off the pill, you can have surgery and your body will explode in endo, you can do nothing and be fine, nothing will be definite. That’s very frightening. So because there is no guaranteed treatment, the only thing I can say is to listen to yourself and do what feels right for you. You don’t have to have surgery, you don’t have to be on hormones, and if you choose to opt out of those treatments you are still entitled to be scared and lie in agony on the bathroom floor wishing you were dead.

The next step for me at this stage is to keep weighing up taking the Dienogest and attend my physio appointment. I expect those things a little way off in the future.

I greatly look forward to my referral for a prescription fingering in the mail.

Click here to read Part 1 and Part 3

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Lo

Lo

Professional amateur writer in Perth, Western Australia. All accompanying illustrations are my own.