Tag: Endometriosis

Recovery & do I Regret Having the Laparoscopy? #Periodically 12

I am now over three weeks post-laparoscopy. I’ve started working, from home happily, and I could be doing a lot worse. But for the sake of record, I thought I better write about how everything’s healing up.

Badly, is the answer.

In my blog about the surgery itself I included this picture of my stomach’s ‘transformation’.

Unfortunately, I think shared my before and after photos a little prematurely. Ten days after the surgery my belly button, for want of a less disgusting word, exploded. Quite literally. But it was a bank holiday weekend and we were on the way to a party, so I slapped on a plaster and carried on. Towards the end of the party my belly button was so incredibly itchy, and as I changed the plaster I discovered the explosion had continued. Hoping it would go away I stuck another plaster on and continued with my life.

I’ll spare you the close up, the live show made my sister gag, #sexy, but here’s how much worse it is from two days post-op.

The Tuesday after the bank holiday I decided it was looking too suspicious and so I went to see a nurse at my new/old GP. She poked it a bit and said it wasn’t infected, covered it with an iodine gauze and said don’t shower or take the plaster off until I see you on Friday.

Friday rolls around slowly with a lot of itching, moaning and stinging. When the nurse and the doctor remove the plaster, hoping to see a nice, dried up wound, they instead find three blisters where the lower half of the wound had been. ‘Huh, I’ve never seen that before’ is yet another thing I had never hoped to hear about my body.

Still not convinced that this new mass growing out of me, like something from Alien, was infected, the doctor umed and ahed before saying ‘it’s the weekend – give her some antibiotics’. So the weekend went by with me being pumped full of penicillin, taking awkward half body showers, all while the delightful wound continued to blister and get redder and angrier.

Another Tuesday later I’m back at the doctors being inspected and prodded. Still not thinking its infected, the doctor concluded it must be some sort of ‘skin reaction’ and so then I was prescribed Fucidin H (an antibiotic + steroid combo) to rub on this, the world’s most disgusting wound. During this appointment the doctor asked about my pain and pushed on my abdomen. Since my files haven’t correctly transferred from Swansea, trying to explain ‘yes it hurts but it often hurts anyway’ was a little longwinded.

As I write this I’ve returned from the doctors again where this time two doctors had a gander. It looks like I have hyperkeratosis, meaning that the skin is out overgrowing itself. The result is that I might have a bit more of a scar than expected.

SO THE PHYSICAL RECOVERY IS GOING GREAT. Anything too strenuous still hurts, jumping and such, and long walks conjure up some stomach pain on top of the preexisting pelvic pain so that’s nice. Meanwhile the other wound is acting quite proper and is healing up nicely. An actual nice surprise was that my cycle hasn’t been effected by the surgery at all. My period came rather promptly and behaved fairly normally.

Given the increasingly bizarre situation of my belly button my mum said to me the other day ‘I wish you’d never had this laparoscopy’. I’ve been mulling that sentence over for a few days now. Do I regret having the surgery? After all, it didn’t find the cause of my pain and it has temporarily deformed and possibly permanently scared my abdomen.

I can’t bring myself to regret having the surgery. Firstly, it was never really a choice. I was handed from doctor to doctor and they said ‘hey next step is surgery’ and I said ‘hey OK’. It was never an active decision, it was medical practice and advice. Every single one of my symptoms points, or pointed, towards my reproductive health. Checking my uterus out surgically when an ultrasound had displayed nothing, was the next logical step. In fact at that point in time, it was the only step. Now that we know my reproductive health is in tip top condition, we can re-giggle my symptoms and look at my body in a ‘well we know it’s not that so could it be…’ kind of way. The final reason is that to wish I’d never had the surgery achieves literally nothing. I’ve had it, it happened, we know what we know. I wish I knew more, but I don’t BUT I will. Of course it’s frustrating, but powering on is the only fruitful attitude to have.

Besides, no one ever really saw my belly button anyway – I’ve never been one for crop tops.

September 11, 2017
Good news, bad news & speculation #Periodically 10

Know that feeling of relief when you worry about a worst case scenario but when push comes to shove everything is OK? I do, I had it for about half an hour after my surgery, but that was all.

Last week my lovely mum managed to get me to Swansea, operated on and back to Essex in 27 hours. It was my last rendez-vous with the Welsh NHS system (that I already miss) and it was a diagnostic laparoscopy – keyhole surgery to look for signs of endometriosis on my uterus. My biggest fear, as I discussed last week, was that the doctors would tell me that there was ‘nothing’ wrong.

A whole bay to myself

We arrived at the hospital bright and early at 7:30am and they promptly told me I was first on the list of two – thank you summer holidays! I was actually relieved to find myself in pain on this particular morning. By my logic, if it was causing me pain then they would be able to see whatever was causing it in action. My anaesthetist Dr G and his student came to see me first – they were super friendly and informative throughout the whole day. Then Dr M’s registrar, so my second gynae, who I hadn’t met before showed up and we rewrote my consent form and ran through what was going to happen. They would go in for a look, if there was nothing I would only have the one incision, if there was anything wrong it could be up to four. Then I got to see Dr M who would be performing the laparoscopy. He is not a man of many words, our second and final meeting was brief.

Gowned, naked and exposed I was wheeled down to the prep room where people stuck various things to me and in me while asking what I write about – “female health, actually!” Dr G was hosting an A level student and so everything was explained above me as they administered painkillers and then anaesthetic to my cannula, before Dr G said “see you in half an hour – or an hour if we find anything! Think of nice dreams now and you’ll wake up to nice things’.

Gowned, naked, exposed and HOPEFUL

‘OK’ I thought, ‘I’ll dream of a diagnosis…’

Opening my eyes in recovery I immediately clocked (literally) that it had been over an hour. First shot of relief. The nurse was asking me questions but I had zero interest in them so I immediately asked ‘how many holes?’ Understandably confused she asked what I meant, to which I very eloquently clarified ‘how many pokey holes?’ while pointing at my belly. She lifted my blanket and gown and confirmed, ‘two pokey holes’. Second shot of relief. ‘Looks like you’ve had a couple of cysts removed, love’ were her next words. TWELVE SHOTS OF RELIEF.

Cysts! I can handle cysts. I’ve tested negative for polycystic ovaries so if it’s just a couple of cysts that might rectify everything. This was the best case scenario! Hurrah! Contented with relief I now answered her actual questions. Yes, I did feel sick, but only because I’d had a breathing aid down my throat. Yes, I would like some pain relief. No, I didn’t have a headache. She then handed me and my file to my ward manager Viv with the words ‘she’s had a cyst removed’. Hmm, ‘cyst’ singular this time. First shot of doubt.

Cysts? No cysts? Who cares when you’re this good looking?

Wheeled back to my mum I said ‘cyst! Or cysts! I’m not sure’. Then it was my mums turn for relief, she also knew that in this case no news was not necessarily good news. She called my dad and let my sisters know what was going on while we waited for the gynaes to come and talk to us. I was in a fair bit of pain at this point, but it seemed, it was worth it. And then in marched the gynaecological registrar, no Dr M. I smiled at him, waiting for confirmation that I wasn’t insane. ‘So the surgery all went well, we didn’t find any endometriosis. There was a 2cm cyst but obviously that’s just a normal ovulation cyst. So yeah, good news really because nothing’s wrong, bad news because we don’t know what’s causing your pain’.

Oh.

So I didn’t have any cysts removed. But I did have a cyst, an ovulation cyst. I’m ovulating. I could’ve bloody told them that from Clue which had already notified me of that very fact. I just frowned at my mum while she asked actual questions. I was, am, gutted. ‘Whatever it is, it’s not gynaecological,’ he informed us. Apparently, after everything, my uterus is a ‘nice and healthy looking uterus’. Even my ovaries are in the right place.

Alive, but unimpressed

Worried about my risk of clots on the drive back to Essex, Dr G ordered a blood thinner, but otherwise, a few more painkillers and lunch and we were on the road by 2pm. I love lasagne and rice pudding, but they only marginally cheered me up.

A few days on, I’ve had time to process and I am realising how grateful I should be that whatever the problem is, it doesn’t lie in my reproductive health. Maybe whatever is wrong will be more treatable than the unknown entity of endo. But I am equally disillusioned with the idea of having to start this entire process all over again, in Essex of all places where GP appointments are much harder to come by than in Swansea. #ToryBritain.

It is difficult to go through such an invasive procedure and to be none the wiser afterwards. Endometriosis needs an easier diagnosis method. I knew that before, but if there had been a less invasive way to rule endo out of the equation, it would have saved a lot of heartache. Not receiving a diagnosis initially felt like I needed to just bounce back, having wasted everyone’s time. But I have had two pokey holes poked, and the hope being taken as quickly as it was given has left me with a bit of emotional whiplash. Besides, the surgery didn’t reveal nothing. I know now that this pain isn’t gynaecological and that my reproductive health is in fact, healthy – though it would be nice if I could actually use it. What pain I do have is calmed down by paracetamol but is noticeably worse in the evenings.

Physical recovery wise, I’m starting to feel good. I’m sleepy, moany and achey but I’m walking around and irritating my family with little hindrance. During a diagnostic laparoscopy they fill your abdomen up with carbon dioxide, which has left for some interesting bloating. The wounds are seemingly healing well but the area is very sore and my belly button no longer looks like my belly button. It looks a bit like they’ve untied it and then retied it differently. I’ve had some vaginal bleeding but nothing major. I was shocked back into sanitary towel usage when I discovered a pad literally wedged between my legs after surgery. They assure me tampons and cups will be fine to use for my next period though.

Proof that they really fill and tie you up like a balloon…

Chances are, if it’s not my womb then it’s probably my bladder or bowel. Already, my right side, where most of my ‘period/ovulation’ pain is focussed, has swollen and is much more painful than the left following the surgery, meaning I’m still very suspicious of the area. I daren’t speculate, especially since the registrar, who made a point of saying he would not speculate, proceeded to speculate far enough to suggest I might need to go gluten-free (The horror!) I have had a plethora of bladder issues from the age of two till eleven, that restarted around the age of eighteen, so I think we will first explore the bladder.

What for this blog then, you ask? Well I think things are likely to get less menstrual (though who are we kidding, probably not). Whatever the problem is, it is either worsening or being worsened by my menstrual cycle so I don’t think we’re done there. But while we wait for hospitals, doctors, practices and two countries to sort their shit out transferring and referring me, I think it’s likely that these blogs might begin to take up the other meaning of Periodically – in that they will occur from time to time.

Thank you everyone for the well wishes over the past couple of weeks. Even if it’s reluctant, I’m looking forward to exploring yet another part of my body in the hope of a future with a bit less pain.

For now though: walkies, reading and puppy snugs!

August 22, 2017
‘Wait and see’ – Thoughts before diagnostic laparoscopy #Periodically 9

“Just wait and see,” my mum keeps telling me, anytime I speculate about what exactly is going on with my uterus. For a while it’s been a really annoying command. “I need to know now,” my brain disputes. But finally, it’s not long until the waiting is over and the seeing can begin.

This week I have my long awaited diagnostic laparoscopy. For those who don’t know this is, or should be, simple keyhole surgery to determine if endometriosis is the cause of my pain and other issues. If there are any lesions (sticky bits of endometrium in the wrong place that can potentially bind organs together) they’ll remove what they can and then discuss possible treatments with me. A possible treatment, other than repeated surgery, is likely to be returning on the pill, an idea, you now know, I am not a massive fan of.

Instead of going off on one of my usual tangents about how unfair it is that female health has been neglected, making common problems like endometriosis seem harsher in a world of medicinal advancement (still got it in there though, didn’t I?), I want to talk about what I worry is the most likely outcome of the surgery.

“Nope, nothing wrong Ms Webb, off you pop!” The words I fear Dr M is going to say to me after the surgery have started to give me nightmares. I know it is a reality for so many women seeking enlightenment about their reproductive health but I am terrified that I’ll be joining the gang. There’s not a conspiracy here but there is a lack of understanding. When I’ve discussed pain during sex Dr H has been great but other doctors and nurses who I’ve mentioned it to, while also mentioning my lack of desire to return on the pill, say nothing. But in the nothing, I can’t help getting a vibe that says “shut your legs, harlot”. I think it’s highly unlikely, and unfair of me to assume, that they are actually thinking or suggesting this, but once all other options have been exhausted there’s not much left except abstinence from penetrative sex. They know this and so do I. It’s become an elephant in the room. While many people tell you to anticipate descending towards a new chastity at the very end of your life, it’s not something I want to be facing at twenty-two.

So call me disturbed, but I really hope that after the surgery I hear that, in fact, there is something wrong with me (ideally something that they’ve fixed). At least if I have a condition with a name, I won’t feel like it’s all in my head and I’ll have somewhere to direct my frustration.

But until then, let’s just wait and see.

August 14, 2017