Tag: Gynaecological

Carers who really care

The doctors and nurses who looked after me when I was in hospital for my operation last week were fantastic. I owe them huge thanks. It was really busy on the ward the two days I was there, probably all the more so because a lot of surgeries had had to be rescheduled from the previous day. From my arrival, they were sensitive and compassionate. I was there because of my physical health but they knew about my mental health as well and we discussed it during my assessment when I arrived. The nurse taking care of me took time to be really aware of how both my physical and my mental health issues were affecting me and to enquire about whether I was getting the help I felt I needed and would be supported once I returned home after the operation.

It was a minor op but still daunting to me. The nurses and doctors’ compassion, communication, availability to answer questions, even simply their general presence, genuinely doing all they could to help, made such a huge difference. One nurse even taught me the instant ice trick!

I wasn’t an emergency, an urgent or complicated case, thanks be to God. They treated so many people in those two days, most of whom I’m sure needed much more care than I did. Yet they still had time for me.

I am so thankful for these people who give so much.

Ginny xxx

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Post op confused.com

Post op confused.com

I’m sorry for such a long silence. On Thursday last week, I had my small operation. It has taken me a few days to get back to the point of being able to write again. Anaesthetic and I are not the best of friends so the first couple of days after the op were not very nice. Now it’s good to be back! I’ve missed you all and I’m looking forward to getting caught up, both here and with your lovely blogs. I still have pain but it’s manageable.

The operation did not go in the way expected and it isn’t medically bad, but it is confusing.

The plan of the operation was to do a laparoscopy and laparotomy – look inside the womb, look outside the womb and at the surrounding organs, remove the endometriosis and insert the coil, all under general anaesthetic. (I don’t want to bore people going into too much detail as I’ve posted on this several times before, however you can read more about it here , here and here.)

I had been told for around the last 2 years that I have endometriosis and that this is what has caused the last 10 + years of heavy, really long and painful periods, bladder problems, constant pelvic pain, back pain, amongst other things. So I was expecting a big benefit of the operation to be removing the endometriosis and that therefore my symptoms would reduce or go away afterwards.

When I saw the consultant right after the operation, he said that they found no endometriosis at all. I don’t have it. It was the wrong diagnosis. They cleaned out my womb (eeek!) but found nothing wrong with my womb or the fallopian tubes. There were no cysts and no growth of cells outside the womb or onto other organs like the bladder, which they had previously been sure there would be. They did insert the coil.

I was stunned. Of course, it is really good that I don’t have endometriosis. From the reading up I have done over the last couple of years (for example, here), I know what a terrible condition it is. On the other hand, this outcome has left me really confused. It has left me without any specific explanation for my symptoms. It means I do not know whether or not I am going to get the improvement in my symptoms, especially the debilitating pain, which I had so much hoped for after the operation.

Also, I felt really stupid, fake and that I must be imagining it all. I shouldn’t have had the operation – yet again I’m a fake – my mind was screaming at me. The doctors were kind and they said it wasn’t my fault and wasn’t wrong that they did the operaiton. It was their decision to do it and my symptoms had worsened to the point that they needed to do it, if only for the exploratory purposes of finding out exactly what is going on. Endometriosis growth typically does not show up on any kind of scans – the only way to find out 100% for sure if / where it is present is to operate.

It’s a good thing they have checked out the situation. If it was essential to look inside, I almost kind of wish they’d have done it years ago rather than giving me all different kinds of medications potentially to treat the wrong thing. However, I do understand some women find that whatever the exact problem is, medications like the Pill and tranexamic acid can manage the symptoms and that’s how it’s treated, even if you can’t remove the root cause (kind of weird to try to get my head round).

Everything feels very confusing. My head is getting noisy at times with all the thoughts of being fake, having imagined it, having deceived people, specifically having deceived people into helping me and treating me. Fraud, fraud, fake, you made it all up, liar…. the voices say. When you have that struggle in your head already, having a load of “unexplained” physical symptoms that are horrible in themselves but are hidden and not able to be proved (you can’t see them on a scan, for example) is horrible and really triggering.

The doctor said that there could be a problem with my ovaries. I’m not sure exactly what problem he is thinking of. I was still reeling from the “no endometriosis” news and was still confused and foggy from the anaesthetic. I will have to check that out with my GP. The doctor also said that some women do have really heavy painful periods simply because of hormonal problems.

The coil I’ve had fitted should help with that. It’s definitely a plus that they have been able to insert the coil. All being well, I can have it for 5 years before it needs to be changed. It is good that it was done under the anaesthetic because for various reasons, some to do with the effects of the sexual abuse when I was a child, it is too difficult for the doctor and painful for me to fit it without anaesthetic. The doctor explained that the coil can take 3 – 6 months to settle in. (Seriously? 3 months? What’s it up to for goodness sake – is it popping out to buy a new 3 piece suite at Ikea? 😉 Still…) Then, it’s hoped that I will have no monthly periods, or that they will be much lighter.

This means the next step is to wait to see what happens in the coming months with the coil, and to find out what may be the issue with my ovaries. In addition, I will potentially need some more investigations. They may need to look further into what is causing my bladder issues, since it wasn’t endometriosis growths. This could be part of my fibromyalgia, or the neuropathic symptoms.

I’m also at the start of being investigated for a potential connective tissue disorder. I’ll leave that one for another post as it’s rather a long story, but I have just found out that it can contribute to a lot of gynaecological problems, as well as joint problems and pain.

Thank you so much everyone for your support in all your lovely kind comments leading up to the op. I do feel guilty now after you gave me all that support and it then turns out to be not at all the diagnosis that it was thought to be! I’m sorry. I feel really bad for posting before having been so sure it was something it wasn’t. It was what the doctors had told me it was, but I still feel bad. Your encouragement and friendship still really means a lot whatever the ultimate diagnosis and treatment is. I’m thankful.

Ginny xxx

[Image sourced from memecenter.com – with thanks]

Op tomorrow – and a short silence

Here we are. It’s my op tomorrow.

Surprisingly for me, until I left work today I was not feeling nervous. Then my colleagues who knew about it were all so supportive wishing me well. ..and ah yes up popped the anxiety again. Hallo there 😉

Tonight I have several things to do – check my transport for tomorrow, to see if there’s an early enough bus or if I need to get a taxi, get some groceries as I may not be able to get out for a few days after the op, text my friend who is very kindly bringing me home on Friday, call Dad, tidy up at home, pack, get myself ready….eek. But plenty to think about which is probably a good thing!

Thank you so much for your support, messages, wishes, prayers and caring. It really means a lot at the moment. I never expected to find so much friendship through blogging and I’m hugely thankful.

I imagine I won’t be able to post for a few days whilst I’m recovering. I’m sorry in advance for the silence. You are in my grateful prayers and I’ll be back in touch as soon as I can.

Ginny xxx

Gynae update – almost op time

Warning gents (or anyone for whom this may be TMI! )- look away now if you wish 🙂 !

It’s almost op day.

My surgery is scheduled for this Thursday. (It was postponed by one day because of the junior doctors’ strike.)

On Friday I had the pre-op assessment, where they check things like your blood pressure, that you don’t have particular infections,  or any conditions they need to be aware of which may make anaesthesia more risky. Thankfully all went fine.

This afternoon, I’m going in for an MRI scan. I was just about to get on the bus to the hospital when I got a phonecall to say the scanner was broken and my appointment was canceled! I really put my foot down. I need to have the scan before the operation. I questioned when they booked it (after an A&E doctor and I had kept chasing!) the fact that it was so close to the operation and was assured it would be fine. After the severity of symptoms I’ve had there was no way I was going to risk the operation getting postponed because they didn’t do the scan. I don’t usually insist for things like this but today I did. They were not forthcoming at first but I’m now to go at 4.30pm and wait however long it takes for another scanner to be available. I’m just thankful it’s being done today so the op can go ahead.

On Thursday I have to go in for 7.00am. All being well I’ll stay in overnight and come home the next day. I’m so so much hoping they can do what they want to and it fixes something. They are doing exploratory surgery, they are hoping to be able to remove some of the endometriosis and they are going to insert the coil. Depending how bad the endometriosis is they may not be able to remove all of it (they think it has probably grown over the bladder because of some of my symptoms and if it has grown through the bladder they will need to do another operation). I’m really hoping they can remove what they need to and that having the coil helps prevent it returning (I’m not sure about how effective they think that’ll be) and makes my periods lighter. Taking the Pill made no difference and I have still been bleeding for 3 weeks at a time but because the coil releases the hormones in a more localised way in the womb, it’s hoped it’ll be more effective. I was not too keen on having the coil but things have got so bad now I feel I have to try it. They are not willing to consider any other treatments til I’ve tried it. I’m kind of feeling trapped by that but I am also very thankful that after 10 years + of problems, a thorough investigation is now being done.

This past month I’ve really not been great physically. I had 4 days off work because of the pain and bleeding. I could only stand up for a few minutes at a time because I was so dizzy and in so much pain. I’m still having only 2 weeks between periods and they are lasting well over the supposedly usual week. My fibromyalgia and arthritis are bad at the moment too but the gynae symptoms are having a big impact. So Thursday can’t come fast enough!

I’m grateful that I got referred to a consultant who is taking things seriously at last.

Right, time to head off to the hospital and pray that everything is in order for the scan now!

Ginny xxx

 

Some “good” gynae news

This morning I’ve been feeling more encouraged after a positive outcome at the gynaecology clinic. (Apologies gents who may wish to read no further 🙂 !) I know this is off my usual topics but I thought I’d share some good news.

I’ve had extremely painful periods as long as I can remember, especially over the past 10 years, very  heavy and painful. I’ve been in A&E 3 times in the last year or so because of it, have low iron levels, distressing bladder symptoms too which are apparently connected as the endometriosis has grown across the bladder; all in all it is having a big impact on my life. This year I’ve had to take days off work because of it.

Today I finally had an appointment with a specialist at the hospital. It has taken so long to get a referral, after trying several different medications and having scans. She was very compassionate and thorough. I am going to have an MRI scan of my womb and then a minor operation partly to investigate, partly to remove endometriosis  (hopefully – if it’s too bad they won’t be able to do it at the same time and would need to operate again), and to insert a coil (I didn’t really want this but it may be one of the only options).

I’m so grateful that at long last the problem is being investigated and treated rather than just trying different tablets which all affect your hormones a lot, which “should” help because it’s “probably” this or that, without really knowing what is going on. It has taken years to get here but now I’m feeling optimistic there will be some answers at least, even if the operation doesn’t get rid of the problem straight away.

This has to be the first time for a while where it feels as if things are moving in the right direction!

Ginny xxx

Wobbly week

This has been a very odd week.  At the beginning I was very distressed by ongoing problems from my old job. Having tried not to judge my old employer or make assumptions or blame them,  things that have happened now leave me in no doubt they are covering up what happened, lying about me and what happened whilst basically telling me I’m lying, and discrimination, bullying and harassment is going on, worse still, still affecting people who still work there.

I felt anger I’ve never felt before and determination not to let this rest. Also extreme hurt, very alone because two people who I thought I could count on for help have in the case of one apparently cut off contact and in the case of the other,  he seems to think I should just be able to ‘let it go’ and let them get away with it. He doesn’t think it was that bad.

Again I was hurt beyond what I could cope with. And the obsessional thoughts about being worthless and everyone knows it and I deserve to be alone, went wild. Then a friend cancelled a meet up I had been so ridiculously desperately holding on n to. And I was going to thousands of pieces and hating my childish self for it.

But then Tuesday night I became very ill physically from my ongoing gynaecological problems (endometriosis etc). I blacked out and was very unwell. On calling the out of hours GP I was told to go straight to A&E. So off I went. I won’t bore you with the whole story but Tuesday night to Wednesday lunchtime I was in hospital with a lot of pain, sickness and lovely things you certainly don’t really want to picture 🙂 !

Anyway, before slipping into the realms of distinctly too much information… My friend’s mum brought me home Wednesday lunch time. She was so kind to me and stayed with me whilst I washed and changed and got settled to make sure I was safe. She even swept the leaves away from my door where they’d blown in strong winds overnight. She was so so caring. She did so much beyond what I’d ask or imagine, to look after me when I was that unwell. I have a very good friend more than I knew!

So amidst these horrible days, that was a gift.

Also, the physical pain and shock somehow flung me away from the internal mess that was going on with all my feelings at the start of the week. Since then I’ve been so tired I’m not very sure what I’m feeling. I’m mixed up.

Tomorrow I’m back at work. Fortunately I only missed one day as Thursday was my day off and I don’t work Fridays as I have my therapy. I’m hoping I’ll cope okay, mentally and physically.

Ginny xx