Endo Follow-Up
Thought it was time I wrote a follow up to my endometriosis post. Today is the day I got 1000 views on it! super chuffed! Today is day two of my period. The worst day. My last post was written on day two post-op so I like the similarity of that.
I'm currently curled up on the couch, under a blanket i've had 12ish years (its been washed a few times) with a heat pack on my abdomen. I have taken co-codamol with minimal effect. I also have the hiccups but that is neither here nor there, just annoying. I've got cramps that are shooting pains down my leg, wrapping around my sides and back and knocking on my spine. If I sit totally still, with my legs bent, I can almost pretend the cramp isn't that bad, TV and chatting can distract me from it so I feel almost normal...although my usual right sided stabby pain is creeping in.
Since my operation two and a half weeks ago, my pain has been worse not better. I'm hopeful this is all part of my recovery. Having spoken to fellow endo-sisters and done some research, some women are made worse from ablation surgery. Excision surgery seems to have a higher success rate but who knows what my future holds. There is no cure for endometriosis. I realised I never said what endo is and as a lot of people don't know I thought I'd put a quick description of it. Endometriosis is when the endometrial lining (the tissue that lines the uterus) grows outside the uterus. It can grow on the uterus, ovaries, bladder, bowels, fallopian tubes, diaphragm etc etc. In rare cases it can grow in the lungs (making the woman cough up blood during her period) and on the skin. These growths, act like the lining, meaning they bleed during your period. It is painful, plus the pain isn't limited to just during periods or the areas effected. It can cause depression, fatigue, aches, nausea, constipation and infertility.
Following on from my last post; By Sunday (post-op day 3) I was no longer constipated (yay - although a painful experience) I even managed a short walk around the block. By day 7 I was going for one or two walks a day, still having to stop frequently. I also broke out in a sweat from the shortest, slowest walks. That was the day my stitches were due out, as I frequently take stitches out at work I didn't bother making an appointment with the practice nurse, instead I instructed F how to do it. He did the bottom incision, the skin had grown over the stitches some what which made the first removal super painful (apologies to any patients if its been that bad as I had no idea it could be). With gritted teeth I let him remove the second stitch. I think my body really didn't like the stitches. We decided to do my belly button site the next day, I had been cleaning it a few times a day but it did not look great.
Not sure what day it was but my mental health really deteriorated. Having a diagnosis has helped with my depression (along with a recent med increase) as I know I'm not crazy and it's not all in my head. I've joined a endo support group on facebook (thanks to F for finding it) and have had heaps of friends messaging me to tell me they have it too - you just never know who's suffering in silence. I have great support from F, family and friends. However on this day, it all hit me, having surgery, the likelihood of needing further surgeries, being diagnosed with a life-long condition that has no cure...there was a lot of tears and anger that day, as I'm sure there will be through-out my life. As well as blogging I have taken to twitter (@hemysaurusrex) to vent and connect with other endo-sisters (and share cute animal videos). It all makes me feel less alone in it.
My belly button kept deteriorating, by the Saturday (post-op day 9) it was super smelly, red, extra gunky and extremely painful, there was also a hard lump underneath it so off to a&e we went. I was also in a great deal of pain, not just in the usual spots but it felt like I had a stitch all along my diaphragm. In total we were there 4.5 hours, mostly waiting. All the staff I saw were lovely, the a&e doc did worry me slightly though as she thought the lump might be an abscess. The gynae doctor was one of the nicest doctors I've ever met, she even sniffed my belly button as smell can be a great diagnostic tool. After checking my bloods, removing the stitches and taking some swabs, I was sent home with a weeks worth of strong antibiotics (flucloxacillin 1g 4x daily) and some more co-codamol. The lump is scar tissue, I have since noticed one under my second incision site too. The antibiotics worked fairly quickly, didn't help to lift the tiredness though. The lovely doc did call me on the following Thursday to say my swabs had come back showing amoxicillin resistant so she was going to send my GP instructions for a different type of antibiotics as mine were also penicillin based but as they had been doing the job and I only had two days left I declined the offer. Yay for a healed belly button (I never thought I'd talk about my belly button, quite so much) although the antibiotics did give me a strong case of thrush.
I've had good days and bad days. Days with barely any pain and days I can barely walk from one room to another, mostly spent curled up in bed. Days I bounce between anger and sadness, hating the thought of chronic pain for the rest of my life and days I'm happy and I'm hopeful the surgery has majorly helped and I'm still in the recovery process. Luckily the happy days outweigh the sad days.
I'm currently curled up on the couch, under a blanket i've had 12ish years (its been washed a few times) with a heat pack on my abdomen. I have taken co-codamol with minimal effect. I also have the hiccups but that is neither here nor there, just annoying. I've got cramps that are shooting pains down my leg, wrapping around my sides and back and knocking on my spine. If I sit totally still, with my legs bent, I can almost pretend the cramp isn't that bad, TV and chatting can distract me from it so I feel almost normal...although my usual right sided stabby pain is creeping in.
Since my operation two and a half weeks ago, my pain has been worse not better. I'm hopeful this is all part of my recovery. Having spoken to fellow endo-sisters and done some research, some women are made worse from ablation surgery. Excision surgery seems to have a higher success rate but who knows what my future holds. There is no cure for endometriosis. I realised I never said what endo is and as a lot of people don't know I thought I'd put a quick description of it. Endometriosis is when the endometrial lining (the tissue that lines the uterus) grows outside the uterus. It can grow on the uterus, ovaries, bladder, bowels, fallopian tubes, diaphragm etc etc. In rare cases it can grow in the lungs (making the woman cough up blood during her period) and on the skin. These growths, act like the lining, meaning they bleed during your period. It is painful, plus the pain isn't limited to just during periods or the areas effected. It can cause depression, fatigue, aches, nausea, constipation and infertility.
Following on from my last post; By Sunday (post-op day 3) I was no longer constipated (yay - although a painful experience) I even managed a short walk around the block. By day 7 I was going for one or two walks a day, still having to stop frequently. I also broke out in a sweat from the shortest, slowest walks. That was the day my stitches were due out, as I frequently take stitches out at work I didn't bother making an appointment with the practice nurse, instead I instructed F how to do it. He did the bottom incision, the skin had grown over the stitches some what which made the first removal super painful (apologies to any patients if its been that bad as I had no idea it could be). With gritted teeth I let him remove the second stitch. I think my body really didn't like the stitches. We decided to do my belly button site the next day, I had been cleaning it a few times a day but it did not look great.
Not sure what day it was but my mental health really deteriorated. Having a diagnosis has helped with my depression (along with a recent med increase) as I know I'm not crazy and it's not all in my head. I've joined a endo support group on facebook (thanks to F for finding it) and have had heaps of friends messaging me to tell me they have it too - you just never know who's suffering in silence. I have great support from F, family and friends. However on this day, it all hit me, having surgery, the likelihood of needing further surgeries, being diagnosed with a life-long condition that has no cure...there was a lot of tears and anger that day, as I'm sure there will be through-out my life. As well as blogging I have taken to twitter (@hemysaurusrex) to vent and connect with other endo-sisters (and share cute animal videos). It all makes me feel less alone in it.
My belly button kept deteriorating, by the Saturday (post-op day 9) it was super smelly, red, extra gunky and extremely painful, there was also a hard lump underneath it so off to a&e we went. I was also in a great deal of pain, not just in the usual spots but it felt like I had a stitch all along my diaphragm. In total we were there 4.5 hours, mostly waiting. All the staff I saw were lovely, the a&e doc did worry me slightly though as she thought the lump might be an abscess. The gynae doctor was one of the nicest doctors I've ever met, she even sniffed my belly button as smell can be a great diagnostic tool. After checking my bloods, removing the stitches and taking some swabs, I was sent home with a weeks worth of strong antibiotics (flucloxacillin 1g 4x daily) and some more co-codamol. The lump is scar tissue, I have since noticed one under my second incision site too. The antibiotics worked fairly quickly, didn't help to lift the tiredness though. The lovely doc did call me on the following Thursday to say my swabs had come back showing amoxicillin resistant so she was going to send my GP instructions for a different type of antibiotics as mine were also penicillin based but as they had been doing the job and I only had two days left I declined the offer. Yay for a healed belly button (I never thought I'd talk about my belly button, quite so much) although the antibiotics did give me a strong case of thrush.
I've had good days and bad days. Days with barely any pain and days I can barely walk from one room to another, mostly spent curled up in bed. Days I bounce between anger and sadness, hating the thought of chronic pain for the rest of my life and days I'm happy and I'm hopeful the surgery has majorly helped and I'm still in the recovery process. Luckily the happy days outweigh the sad days.
Back in A&E
Bottom incision site
Belly button on day 1 & day 8
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