Any advice or experiences

[Pureunicorn]

Hi all, so I've just had an ultrasound and I have 2 cysts on both ovaries the biggest is 4cm and on the left side, but my right side is where I get the most pain (I'm in a lot of pain at the mo) I'm still waiting for my blood results, hopefully I'll hear from my specialist soon 🤞 as I'm waiting for a hysterectomy, so I suppose my question is people experience with cysts, pain and endometriosis? Just feel so lost and alone at the mo, and fed up with the whole thing x

[Chicken2012]

Hi sorry to that are you still on depectyl?

[Pureunicorn in reply to Chicken2012]

Hiya, yes I am, waiting to hear from my local hospital to have a bone density test as cant have that done at the hospital I'm under for my endo 😒🙄. My pain today is getting unbearable, I had my first covid injection yesterday but I dont think that's anything to do with it. It's just more waiting again for results.How are u doing? Any news? Xx

[Chicken2012 in reply to Pureunicorn]

Hi that’s a shame I felt that I potentially had a cyst a few months ago, painful unsure as the radiographer refused to scan. I’m tired and quite run down , lacking motivation. Been told my hysterectomy should be in July or August. Have you heard anything about yours. Can I ask what area you are in ? I’m in south west Devon .

[Pureunicorn in reply to Chicken2012]

I feel the same! No they said hopefully once they have all the test results back they can give me a date, hopefully it will be this year but cant be sure as I need a joint procedure 🙄. Im based in suffolk but under colchester hospital. Fingers crossed it happens for u in July/August, keep me posted 😁👍 xx

[Chicken2012 in reply to Pureunicorn]

I will do I’m in plymouth we only have one hospital which covers a big area. I hope you get your joint procedure keep me posted as

[lthompson81]

I had a hysterectomy last week had endo everywhere and my ovaries and tubes where unidentifiable as they had been taken over by cysts. I had surgery that removed cysts on both ovaries 2 years ago and a little endo but it all came back with a vengeance so had hysterectomy last week couldn't be avoided. Please don't feel alone (I know easier said than done) as you are not alone not at all. These things are sent to try us but you will get through it you just will we are stronger than we think when we have to be. Lots of love and luck to you xxx

[Pureunicorn in reply to lthompson81]

Hi lthompson81, thanku for ur message, sounds like uve been through it, I hope u are doing well after ur hysterectomy and recovery is going well, I just hope I get mine soon but I think I'm in for a wait, but it's nice to hear others experiences xx

[Nats31]

You're totally not alone. I have a 10cm cyst on my left side ovary and stage 4 endo. I'm in South Africa and only recently managed to get into hospital care. I'm in crippling pain Every. Single. Day! All on my right side. I've sat sobbing in the hospital emergency a week ago because I just couldn't take it anymore. They have no plan for me, I've basically begged them to operate and remove the cyst or even a full hysterectomy, all I get is pain meds that don't help at all.You're definitely not alone in your pain and frustration. I totally understand. Sending you a big virtual hug

[Pureunicorn in reply to Nats31]

Hi Nats31, thanku for ur message, I'm sorry to hear what u are going through, its horrible to be in pain, I was just like u untill I started the decapeptyl injections, but they aren't working as well as they were. I hope u get some help soon xx

[Nats31 in reply to Pureunicorn]

I've never heard of decapeptyl, I was however given one injection of Zoladex. It helped for 2 weeks and furthermore it's just left me with severe hot flushes, joint pain and hair loss. Here's hoping we all get treatment that leads to a somewhat normal life again xxx

[ciaotuffy]

I have a similar experience to lthompson. I had a lap 7 months ago to remove endometrioma/cysts on ovaries, severe endo, tubes. Just 5 months post surgery and I was in so much pain that I went to emergency where the ultrasound showed 5 cm cyst already on right ovary. so soon! I just had total hysterectomy a few days ago with ovaries, uterus removed. Surgeon said there was endo and stuff everywhere from the cyst rupturing/leaking everywhere. That was probably why I was in so much pain. My insides were covered so it's good that I had everything taken out. Please get help sooner if you can. I didn't think things could progress so badly so quickly but it did. good luck xx

[Pureunicorn in reply to ciaotuffy]

Hi ciaotuffy, thanku for ur message, just hope to get things sorted soon! How are u doing after ur hysterectomy? Xx

[ciaotuffy in reply to Pureunicorn]

The first days were rough, but better each day. I'm 4 days out and made it outside for short walk and able to get around much better myself today, although slowly. Recovery from 1st lap was a bit easier, but this isn't Too much worse. I was so scared of hysterectomy beforehand, but it wasn't as bad as I imagined so far. You will get through it, and hopefully the worst will be behind us. xx

[CurlyandConfused]

I get pain on an off - I also have bilateral cysts but the the pain where the smal cyst is. my pain otherwise is more like period pain all over (front, back, upper leg).

Can I ask why you get a hysterectomy? is this because of the cysts?

[Pureunicorn in reply to CurlyandConfused]

Hi Curlyandconfused, I suffer with daily pains, most of the time I can cope with my meds, I have stage 4 endo so I have made the choice to have a total hysterectomy, I dont see the point in keeping what I dont need anymore and which is causing me so much pain, I've been on decapeptyl injections for a year now which have taken the worst of my pains away so a hysterectomy is looking like the best way forward for me, I just want the pain to go away xx