Horrendous flight: Worst nightmare - came... - Endometriosis UK

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Horrendous flight

ccsmith profile image
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Worst nightmare - came on just before a 12 hour flight. Sat crying in the loo as I was dripping blood and struggled to control it! Ended up with double night pads and a tampax! I staining the seat and had to wrap a cardi around my waist. Then wait 4 hours for the next 8 hours of the journey. I’m so relieved to be home, felt so stressed and uncomfortable. Bloody condition 😤

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ccsmith profile image
ccsmith
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Felma profile image
Felma

Progesterone and tranexemic acid therapy can help. Hv to drink a lot of clear fluids and walk around in a long haul flight specially if you are on hormone therapy .

Aww that sounds absolutely dreadful for you. I think you deserve a good cry about how life sucks ( always sorts me out lol as I’m not one for self pity but sometimes it’s justified for a little while to think how unfair everything is) then a nice hot bath, clean pjs and bed. I hope your ok xxx

ccsmith profile image
ccsmith

Thanks Felma sadly I tried progesterone about 3 weeks prior to going and I bled and bled! I also was given tranexemic acid and I had horrendous abdominal pains, upset stomach and nausea even with stomach tablets. Only positive is that I didn’t bleed when we were snorkelling in Australia!

I got home last night and showered and curled up in bed. I’m enjoying the time out now must admit.

Most horrendous experience of my life!

geekybird profile image
geekybird

You poor thing, that sounds hideous. Menorrhagia is horrible and people who haven't experienced it don't realise how debilitating and embarrassing it can be. Please be careful taking long flights if your bleeding is escalating over time. I had a slow haemorrhage that put me in hospital two days before I was due to take a 12 hour flight. Before the bleeding got that bad I had been thinking I would get through the flight with TX acid. In the event, only intravenous TX acid eventually slowed the bleeding and if I had haemorrhaged on the flight I could have died, or had to cover the costs of an urgent hysterectomy (in the US!) as it was a grey area whether the insurers would have considered it a pre-existing condition.

I had another haemorrhage two days later and a hysterectomy a week after that.

Have you some sort of treatment pending? You shouldn't try to live with this condition indefinitely - it affects every aspect of your life, even between periods when you don't realise how your body is constantly trying to recover from the loss of blood until it's not happening any more. If you don't get on with progesterone or TX acid then you should consider an ablation, embolisation if applicable etc.

Personally, having tried a myomectomy and two UFEs (with a few successful years in between), the hysterectomy (keeping ovaries and cervix) has been fantastic for me. I feel like a new woman. Having taken a long time to come to terms with having it myself, I do realise it is not something to be taken lightly though.

One thing to note if you have fibroids, in my experience it is not always the large fibroids that are the cause of this issue, the key thing is whether a fibroid is submucosal - protruding from the uterine wall. First time I had a large submucosal fibroid and the UFE worked, for a few years. When the bleeding came back I had another large fibroid in the same place but it was subserosal - inside the uterine wall. The UFE successfully cut off it's blood supply but the bleeding continued to escalate. Just before the hysterectomy a sonographer spotted on ultrasound a 2cm submucosal fibroid which had not previously been spotted, covered by a jelly like clot. They concluded that little thing was the source of the haemorrhages!

All the best and I hope you get some help with your condition soon xx

ccsmith profile image
ccsmith in reply to geekybird

That’s kind of you I’m actually having a hysterectomy tomorrow. This was the final indignity of this condition for me. I’ve been waiting a year for it as well as a bowel resection. I’ve been struggling with my condition for many years.

I’m hoping this is a new start for me 🤞🏻

I’m glad it’s worked for you and thank you for sharing your story xx

geekybird profile image
geekybird in reply to ccsmith

That's great news! I hope it all goes as well as possible for you. I expect you've had lots of advice on what to take to hospital but just to say I found a small cushion invaluable (to hold over tummy when laughing / coughing / weeing / riding home) and peppermint tea to help with gas since my op was laparoscopic - I asked for hot water whenever they came round with hot drinks, and sweetened the tea with honey. Sending you healing vibes xx

ccsmith profile image
ccsmith

Oh lovely tips I will definitely pack them. I started bowel prep at 12.30 😫 hate it but hey needs to be done. 🤞🏻 mine is laparoscopic too and I forgot the peppermint but will get hubby to go out for me.

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