Update: 2 Months Since My Open Myomectomy - Endometriosis UK

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Update: 2 Months Since My Open Myomectomy

SimplyDeeDee
SimplyDeeDee

I’ve been quite lately I guess purely because I’m fed up of saying I’m fine when I’m not. I feel like if I say I’m not and I divulge the true extent of my condition, people will just brush me off as lazy or a hypochondriac. I’ve lost all hope and I’m forgetting what it’s like to feel normal again.

Just over 2 months ago I had an open myomectomy; the second surgery this year to remove fibroids, additional stage IV endometriosis, adhesions and lesions.

8 fibroids were removed where one was so large and old it was starting to fall apart and my consultant thought this was the one adding to my excruciating pain. My ovaries and tubes had re-stuck since March but unfortunately not all fibroids and endometriosis could be removed due to their location and preservation of my fertility.

Hospital

The recovery period in hospital after surgery was tough, I don’t think you can ever imagine what it will be like unless you’ve had it previously.

I can’t say my hospital experience was good either, the care was very poor and I experienced how badly the NHS has gotten. I was belittled, starved, abused with needles and they took advantage of the situation I was in. This is not an exaggeration my family couldn’t believe what they were witnessing, but as the saying goes when the cats away the mice will play and that is exactly what happened, it got worse when they weren’t there.

Luckily I’m the type of person who will speak up and challenge any wrong doing and the family support I had was amazing I can’t thank them enough.

Post Op

Since my operation there has been a little improvement - A fibroid that was resting my bladder and taking up much of the space was removed and it is starting to function better. The large fibroids resting on my back passage has been removed, however I am still experiencing a lot of discomfort in this area. My digestive system is still very painful and I have sciatic nerve pain.

I’ve lost more weight because eating causes so many problems even when I’m sticking to a special diet. I Also experience no hunger pains which is very strange and my energy level is extremely low.

Cycle

I’ve had two cycles since Prostap started to leave my system, they are still very painful however I didn’t experience the ripping sensation I felt before and I was able to move; no exorcist moment which is good.

Prostap

I can honestly say did nothing positive for me and I wish I’d stuck to my guns and refused to have this. It didn’t shrink the fibroids they actually grew. I had all the bad symptoms:

Migraines day in and day out; they wouldn’t budge even with my pain relief.

Hot flushes and cold sweats constantly.

Joint pain which made feel like I’d aged 20 years.

Extreme hair loss were I had clumps coming out all the time; a dog malted less than me.

Increased depression.

Forgetfulness is an understatement I can’t even get away with calling it brain fuzz.

As this started to leave my system my acne has returned after being clear for over 17 years and my hair has started to grow back and improve in strength. I still have joint pain however this is coupled with the sciatic nerve pain and low energy. My forgetfulness is still strong.

Additional Tests

My results from my colonoscopy were clear which is good. My symptoms mimic colon cancer so I’m pleased this isn’t the case.

I’ve had an additional test on my bowls to see if they can pin point the cause of my complications.

My GP is concerned about my weight loss and issue a blood test to find out if/what foods I may be allergic to and also to check for other health issue. The last blood test I had showed I was anemic so this has to be looked at as well.

Depression

I’m usually quite an active person who likes to get out and about, plus I love driving too.

Being confined to home for long periods of time (because I constantly have to take pain relief and senna) is really affecting me. It’s the season of joy, spending time with family and friends but all I want to do is hide. I’m trying to push through this, it’s difficult but I’m determined to do it my way and not medicated.

Reflection

The last thing I wanted to do was enter 2019 with health issue. I hoped to be all recovered by January so I could start a fresh and action my plans I’d had for 2018. I’ve lost count on how many times I’ve been poked and prodded but I have learned a tremendous amount about my condition; I even examine results with my consultant with better understanding. (I think I need a part in Holby)

Although I have truly been knocked sideways I’ve not lost my smile, sometimes it’s a painful smile but that’s something at least.

6 Replies
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Wishing you best of health in year 2019!

Hugsx love!

Merry Christmas 🎁🎄

Amen to that and same to you too!

Merry Christmas 🎄

Hi sweety, for your forgetfulness you need to start iron. That will help you a lot. And take some stool softener along with it so you don’t get constipated. That will solve many issues. The blackout if any brain fog tiredness. And not able to understand what people say. Take it one day at a time

SimplyDeeDee
SimplyDeeDee
in reply to Dakrav

Hi Dakrav, thanks for your reply and seasons greetings.

It’s tough because I’ve been on iron and zinc tablets but my level don’t seem to increase much. Stool softener don’t seem to work on me for some reason which is why I have to make a tea with senna pods.

I’m waiting to feel some improvement but it’s like a never ending story.

Dakrav
Dakrav
in reply to SimplyDeeDee

Aww. Seasons greetings to you and your family as well. I am so sorry. For me that worked just fine. Each body has its own tolerance. I hope you feel better. You need some more testings if this isn’t working. I so hope you feel better

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