Endometriosis
Decided to get super personal...expect gross photos, TMI and swearing (I'm kinda angry ok?)
So today is Post-op day 2, but I'll get back to that.
Just wanna say, F has been and continues to be, amazing. He looks after me very well and rarely fails to make me laugh when things are super bad.
For about a year I've had chronic pain;
- Random stabby pain in my lower right side which although I've got used to it, took me to a&e twice as I was convinced it was my appendix (it wasn't).
- Occasional stabby pain in my left/middle.
- Thee WORST menstrual cramps. Which start about a week before my bleeding and last until a few days after it stops, so about two weeks (every month!). These cramps cause tears, crouching in the laundry cupboard at work (if I even make it in to work), lying in the shower (often crying too), not being able to get out of bed etc etc.
- Lots of headaches.
- Difficultly peeing/pooping during periods.
- for even longer I’ve had left hip pain, I was told it was a FAI, or in simple terms a hip impingement. Now wondering if it’s caused by my endo.
Along with the pain, my PMS is off the charts, I swing between sobbing and wanting to murder things. I'm on antidepressants for anxiety and depression and while this isn't purely gynae related, it is noticeably worse before/during my period (F can attest to this). I don't want to get out of bed, I don't want to do anything. Often cry for no real reason. Question my relationship(s). And generally just want to disappear (on a plane NOT IN A SUICIDAL WAY). My meds are helping, as is F and the lovely loved ones in my life. I'm also waiting on CBT but ya know, the NHS, *shrugs*. Also heavy, heavy periods. The average volume of menstrual fluid is about 30 - 45mls over 3 - 5 days (according to google). I would hazard a guess that mine is closer to 100 - 120mls over 4 - 6 days. I use a moon cup which holds 15mls, I have to empty it frequently.
So in November last year I convinced my GP to take bloods, they showed abnormal hormone levels (increased testosterone) so she diagnosed PCOS (Poly-cystic ovarian syndrome). I should add it was my preposed diagnosis as my symptoms were similar to a friends.Not much can be done about PCOS. I put my tiredness, pain and weight down to that (obviously that last one wouldn't purely be that). It left me disheartened but I looked into PCOS diets (half heartedly I must admit) and talked to other people with it. I then convinced/begged my doc to send me for an ultrasound to look for cysts as the pain was/is unbearable. She said its not normally done (its routine in other countries) but eventually agreed as my pain was very localised.
- Side note, the pain got so bad on a trip away that I was crying, curled in a ball, could barely talk and my breathing was all over the place. I needed assistance to walk to the bathroom and the pain of passing urine and pooping made me cry all over again, kinda felt like I was being stabbed in the butt (did warn about TMI) F almost called an ambulance but I didn't want to end up in a hospital in a different city so convinced him to wait and see how I was in the morning...sore but not as bad, so we travelled home and I curled up on the couch -
The ultrasound showed nothing. Nada. In a strange way I was hoping for a cyst as then it would at least explain my pain. Was starting to feel crazy.
Cut to a few months later, just putting up with the pain, over the counter painkillers don't touch it. Took a strong dose of co-codamol once which helped - I ended up a wee bit high at a family lunch - but it left me with the worst headache for a week. I was back at the doctors for a routine mental health check/needed another prescription, so I mentioned the pain again. I mentioned endometriosis. She referred me to a gynaecologist.
The gynae was lovely, the appointment took a while to come through but I expected that. She said I don't fit their criteria for PCOS and that my bloods are only slightly abnormal so I should put that out my mind. Due to the (mostly) cyclical nature of my pain she suspected endo to be the main cause. The only way to know for sure is to go for a laparoscopy. It's a procedure where they make two small incisions, one in the belly button and one at the base of the abdomen (just above the pubic bone). They then fill your abdomen with gas and put a camera in so they have a clear view. Mine was booked for the 30th of August, less than a month after my gynae appointment (pleasant surprise) which meant I only had one more period to get through (yay).
So on the 30th, I arrived at the hospital nice and early, after fasting. I went through a check-list with a nurse. I met the anaesthetist who looked into my mouth/throat and asked about my surgical history and explained she would intubate me during surgery to keep me breathing. I met the consultant (Mr. T) a lovely soft spoken man who previously I'd seen stomping around the clinic complaining about over bookings (that was at my gynae app.). He explained things well, put me and ease and genuinely seems to care about his patients. I had been first on the list but got bumped for an 87 year old who wasn't keen on the procedure but her daughters wanted her to get it (no idea what procedure but Mr.T assured me it would only take four minutes). I was soon wheeled through, pricked in the right hand, pricked in the left hand (she missed my vein in my right hand), given IV fentanyl and propofol and gas to breathe and under I went...
I woke at 10:30 in recovery (from a dream I can no longer remember), about an hour 20 after going under, breathing oxygen through a face mask and very groggy. I felt freezing, my chin was chattering. The nurses was great. My oxygen saturation kept dipping as I kept holding my breath. I could see my monitor so I remember making a conscious effort to get my oxygen above 96%. I was given morphine IV and small sips of water. I've never had such a dry mouth, it stayed like that all day although i drank heaps, my lips kept sticking to my teeth, I even got F to feel my gums to prove how dry they were. After about an hour in recovery I was taken back to the six bedded ward where I started the day. Lots of blood pressures were taken. I was given tea and toast which I was looking forward to. I had to dip my toast in my tea and take a mouthful of tea with every bite as my mouth was so dry the toast just went gluggy in my mouth. My first attempt at getting up ended up with me feebly calling "excuse me" from behind the curtains as I thought I was going to hurl. I should add that for all of this I was dizzy and could barely keep my eyes open but I was determined to stay awake as I wanted to get home. I was put back into bed. At about 13:15 I decided to try again, I was even dizzier but couldn't sit with my head between my knees as bending hurts. I was yet again put into bed, this time I was given IV cyclizine for the nausea. It caused me to see double, solid doubles, it was like everyone was an identical twin (I stared at the woman across from me too much - sorry) and everything was a duplicate. It was very, very strange. I've never experienced anything like it. Before I knew it it was close to 15:30 and the receptionist was in as F had asked for an update as last he'd heard I had text saying I was about to get up around 13:00.
Just before I got up, Mr. T came in to update me. I recorded the conversation as I didn't trust my brain to remember everything and F wasn't allowed in the room (something to do with patient's privacy). My uterus, ovaries and fallopian tubes are all healthy. They found deep endometriosis nodules in my pouch of Douglas (who is Douglas and why is he hanging around my uterus?!? he should fuck off quite frankly) and my uterosacral ligament (the ligament that connects the uterus to the sacrum). Mr. T ablated (burst) the endo with helium beams (pew pew) which should clear it for a few years (if he got it all). He also changed my copper coil for the merina one as studies show hormonal contraceptives can greatly improve symptoms. I was on hormone contraceptives for years which could be why I didn't develop symptoms until my mid-twenties.
All the staff were brilliant, couldn't fault them.
Post-op. My lovely friend Lynsey who was working that day at the same hospital, drove me home. F had to help me up the stairs as I was unsteady and spacey (his words not mine). That afternoon/evening is hazy. I slept, took pain killers, ate a plain but lovely dinner, drank lots of water and slept some more. Peeing was a condition of my discharge, it took me two attempts at the hospital and at time of writing I still, sometimes, have to force it, it's like my bladder is still under anaesthetic. (This sometimes happens during my period so I'm so somewhat used to it, uncomfortable as it can be.)
Day one post-op, my mum came over to look after me, F had made soup the night before so we had that for lunch. She had brought me a very yummy brownie. We spent the afternoon on the couch watching crappy tv as she fussed over me and rubbed my feet. The gas they pumped me up with has travelled to my ribs/shoulders which is uncomfortable and very painful at times. My incision sites hurt, especially my belly button, Mr. T did say they had trouble getting that one in and was surprised I wasn't sorer. I didn't feel as bad as I was expecting for being post-op. Turning in bed hurts. sitting upright hurts. Bending hurts. Standing hurts and makes me feel like my guts are going to fall out.
This brings me to today, Day two. The worst day so far. The co-codamol/ibuprufen which helped yesterday hasn't touched the internal pain/cramping today. Unless I sit (lean) in a particular way my ribs and shoulders feel like they are going to burst. There have been tears of pain today, and multiple trips to the shops (made by F) to acquire foods/things to try help (ice-cream and chocolate cake, buscapan and another heat pad). F has very tenderly cleaned the gunk out my bellybutton as I clench my teeth, he cleaned and dressed my second incision yesterday and we've just left it alone today. There is a bruise connecting the two. My stomach is bloated and very tender. I have not pooped since before my surgery, despite endless cups of peppermint tea. Farting hurts.
I have been researching (mainly on Buzzfeed but that counts right?) endometriosis and joined a support/info group on facebook. We also watching surgeries on youtube before mine, helped F more than me I think. I thought writing it all out would help. It has. If you're still reading thanks for sticking through my ramblings. Cross your fingers for me, hopefully this pain now will be worth it as it could potentially lead to a pain-free life (forgot what that's like). I came off hormones as I didn't like what they were doing to my body, but I'm hopeful that they now help improve it.
So today is Post-op day 2, but I'll get back to that.
Just wanna say, F has been and continues to be, amazing. He looks after me very well and rarely fails to make me laugh when things are super bad.
For about a year I've had chronic pain;
- Random stabby pain in my lower right side which although I've got used to it, took me to a&e twice as I was convinced it was my appendix (it wasn't).
- Occasional stabby pain in my left/middle.
- Thee WORST menstrual cramps. Which start about a week before my bleeding and last until a few days after it stops, so about two weeks (every month!). These cramps cause tears, crouching in the laundry cupboard at work (if I even make it in to work), lying in the shower (often crying too), not being able to get out of bed etc etc.
- Lots of headaches.
- Difficultly peeing/pooping during periods.
- for even longer I’ve had left hip pain, I was told it was a FAI, or in simple terms a hip impingement. Now wondering if it’s caused by my endo.
Along with the pain, my PMS is off the charts, I swing between sobbing and wanting to murder things. I'm on antidepressants for anxiety and depression and while this isn't purely gynae related, it is noticeably worse before/during my period (F can attest to this). I don't want to get out of bed, I don't want to do anything. Often cry for no real reason. Question my relationship(s). And generally just want to disappear (on a plane NOT IN A SUICIDAL WAY). My meds are helping, as is F and the lovely loved ones in my life. I'm also waiting on CBT but ya know, the NHS, *shrugs*. Also heavy, heavy periods. The average volume of menstrual fluid is about 30 - 45mls over 3 - 5 days (according to google). I would hazard a guess that mine is closer to 100 - 120mls over 4 - 6 days. I use a moon cup which holds 15mls, I have to empty it frequently.
So in November last year I convinced my GP to take bloods, they showed abnormal hormone levels (increased testosterone) so she diagnosed PCOS (Poly-cystic ovarian syndrome). I should add it was my preposed diagnosis as my symptoms were similar to a friends.Not much can be done about PCOS. I put my tiredness, pain and weight down to that (obviously that last one wouldn't purely be that). It left me disheartened but I looked into PCOS diets (half heartedly I must admit) and talked to other people with it. I then convinced/begged my doc to send me for an ultrasound to look for cysts as the pain was/is unbearable. She said its not normally done (its routine in other countries) but eventually agreed as my pain was very localised.
- Side note, the pain got so bad on a trip away that I was crying, curled in a ball, could barely talk and my breathing was all over the place. I needed assistance to walk to the bathroom and the pain of passing urine and pooping made me cry all over again, kinda felt like I was being stabbed in the butt (did warn about TMI) F almost called an ambulance but I didn't want to end up in a hospital in a different city so convinced him to wait and see how I was in the morning...sore but not as bad, so we travelled home and I curled up on the couch -
The ultrasound showed nothing. Nada. In a strange way I was hoping for a cyst as then it would at least explain my pain. Was starting to feel crazy.
Cut to a few months later, just putting up with the pain, over the counter painkillers don't touch it. Took a strong dose of co-codamol once which helped - I ended up a wee bit high at a family lunch - but it left me with the worst headache for a week. I was back at the doctors for a routine mental health check/needed another prescription, so I mentioned the pain again. I mentioned endometriosis. She referred me to a gynaecologist.
The gynae was lovely, the appointment took a while to come through but I expected that. She said I don't fit their criteria for PCOS and that my bloods are only slightly abnormal so I should put that out my mind. Due to the (mostly) cyclical nature of my pain she suspected endo to be the main cause. The only way to know for sure is to go for a laparoscopy. It's a procedure where they make two small incisions, one in the belly button and one at the base of the abdomen (just above the pubic bone). They then fill your abdomen with gas and put a camera in so they have a clear view. Mine was booked for the 30th of August, less than a month after my gynae appointment (pleasant surprise) which meant I only had one more period to get through (yay).
So on the 30th, I arrived at the hospital nice and early, after fasting. I went through a check-list with a nurse. I met the anaesthetist who looked into my mouth/throat and asked about my surgical history and explained she would intubate me during surgery to keep me breathing. I met the consultant (Mr. T) a lovely soft spoken man who previously I'd seen stomping around the clinic complaining about over bookings (that was at my gynae app.). He explained things well, put me and ease and genuinely seems to care about his patients. I had been first on the list but got bumped for an 87 year old who wasn't keen on the procedure but her daughters wanted her to get it (no idea what procedure but Mr.T assured me it would only take four minutes). I was soon wheeled through, pricked in the right hand, pricked in the left hand (she missed my vein in my right hand), given IV fentanyl and propofol and gas to breathe and under I went...
I woke at 10:30 in recovery (from a dream I can no longer remember), about an hour 20 after going under, breathing oxygen through a face mask and very groggy. I felt freezing, my chin was chattering. The nurses was great. My oxygen saturation kept dipping as I kept holding my breath. I could see my monitor so I remember making a conscious effort to get my oxygen above 96%. I was given morphine IV and small sips of water. I've never had such a dry mouth, it stayed like that all day although i drank heaps, my lips kept sticking to my teeth, I even got F to feel my gums to prove how dry they were. After about an hour in recovery I was taken back to the six bedded ward where I started the day. Lots of blood pressures were taken. I was given tea and toast which I was looking forward to. I had to dip my toast in my tea and take a mouthful of tea with every bite as my mouth was so dry the toast just went gluggy in my mouth. My first attempt at getting up ended up with me feebly calling "excuse me" from behind the curtains as I thought I was going to hurl. I should add that for all of this I was dizzy and could barely keep my eyes open but I was determined to stay awake as I wanted to get home. I was put back into bed. At about 13:15 I decided to try again, I was even dizzier but couldn't sit with my head between my knees as bending hurts. I was yet again put into bed, this time I was given IV cyclizine for the nausea. It caused me to see double, solid doubles, it was like everyone was an identical twin (I stared at the woman across from me too much - sorry) and everything was a duplicate. It was very, very strange. I've never experienced anything like it. Before I knew it it was close to 15:30 and the receptionist was in as F had asked for an update as last he'd heard I had text saying I was about to get up around 13:00.
Just before I got up, Mr. T came in to update me. I recorded the conversation as I didn't trust my brain to remember everything and F wasn't allowed in the room (something to do with patient's privacy). My uterus, ovaries and fallopian tubes are all healthy. They found deep endometriosis nodules in my pouch of Douglas (who is Douglas and why is he hanging around my uterus?!? he should fuck off quite frankly) and my uterosacral ligament (the ligament that connects the uterus to the sacrum). Mr. T ablated (burst) the endo with helium beams (pew pew) which should clear it for a few years (if he got it all). He also changed my copper coil for the merina one as studies show hormonal contraceptives can greatly improve symptoms. I was on hormone contraceptives for years which could be why I didn't develop symptoms until my mid-twenties.
All the staff were brilliant, couldn't fault them.
Post-op. My lovely friend Lynsey who was working that day at the same hospital, drove me home. F had to help me up the stairs as I was unsteady and spacey (his words not mine). That afternoon/evening is hazy. I slept, took pain killers, ate a plain but lovely dinner, drank lots of water and slept some more. Peeing was a condition of my discharge, it took me two attempts at the hospital and at time of writing I still, sometimes, have to force it, it's like my bladder is still under anaesthetic. (This sometimes happens during my period so I'm so somewhat used to it, uncomfortable as it can be.)
Day one post-op, my mum came over to look after me, F had made soup the night before so we had that for lunch. She had brought me a very yummy brownie. We spent the afternoon on the couch watching crappy tv as she fussed over me and rubbed my feet. The gas they pumped me up with has travelled to my ribs/shoulders which is uncomfortable and very painful at times. My incision sites hurt, especially my belly button, Mr. T did say they had trouble getting that one in and was surprised I wasn't sorer. I didn't feel as bad as I was expecting for being post-op. Turning in bed hurts. sitting upright hurts. Bending hurts. Standing hurts and makes me feel like my guts are going to fall out.
This brings me to today, Day two. The worst day so far. The co-codamol/ibuprufen which helped yesterday hasn't touched the internal pain/cramping today. Unless I sit (lean) in a particular way my ribs and shoulders feel like they are going to burst. There have been tears of pain today, and multiple trips to the shops (made by F) to acquire foods/things to try help (ice-cream and chocolate cake, buscapan and another heat pad). F has very tenderly cleaned the gunk out my bellybutton as I clench my teeth, he cleaned and dressed my second incision yesterday and we've just left it alone today. There is a bruise connecting the two. My stomach is bloated and very tender. I have not pooped since before my surgery, despite endless cups of peppermint tea. Farting hurts.
I have been researching (mainly on Buzzfeed but that counts right?) endometriosis and joined a support/info group on facebook. We also watching surgeries on youtube before mine, helped F more than me I think. I thought writing it all out would help. It has. If you're still reading thanks for sticking through my ramblings. Cross your fingers for me, hopefully this pain now will be worth it as it could potentially lead to a pain-free life (forgot what that's like). I came off hormones as I didn't like what they were doing to my body, but I'm hopeful that they now help improve it.
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