Advice/support/experiences please-ovarian cysts?
Posted , 12 users are following.
I have cysts on both sides. left hand side about 11cm, right hand side 10cm.
I am being sent for an "urgent" MRI in 7 days. Rather worried how I will stay still for a whole hour all by myself in the MRI? Any tips please?
Then I go back to the consultant the week after to see if they are cysts or cancerous and how we will treat them.
I am having dizzy spells where I feel that the world is turning to the right. Constant back pain that feels like something is pressing on my back which makes me feel like I need to go poo.. Gassiness. I can feel the cysts as painful lumps from the front too. My stomach is hard and stretched.
I'm feeling very tired from the discomfort and worry.
My appetite is still pretty normal.
Sex is a little painful in certain positions as my tummy is tender and I can't fold up my body properly. I'm not able to move as easily.
They have been "watching" the cysts for 2 years now and have seen them grow from 5cm to 7cm to 11cm. Only now are they doing something about it.
My Ca125 test was 31 six months ago, it is now 37.
I'm very anxious and on edge.
I have no idea what the 'cysts' are made of though my last report said they have a "mild vascularity".
Also, I am diabetic and I have PCOS.
Any advice or support ladies? I need it to get through this uncertain time.
5 likes, 260 replies
maryvee
Posted
It's so nice that we all have each other for help and support through this time
maryvee
Posted
I had one of my worst nights to date last night. The cyst was killing me and I sat on the loo. Hubby bought me a cold wet cloth for my head to help with the pain and a bowl when I said I felt sick with all the heartburn. I threw up until I was dry heaving and had diarrhoea too. Hubby was taking my blood as I threw up to make sure I wasn't hypo! I cleaned up and hubby got rid of the bowl, I showered and lay in bed shivering so hubby got blankets and warmed me, finally fell asleep about 3am and have to work today! The cyst on the right hand side feels like it's straining, have an awful headache too.... surgery can't come too soon for me.
dobb34487 maryvee
Posted
Oh Mary,that's just horrific for you.Would you go to A&E? Have docs given you warning or danger signs of rupture etc.That is not normal to have to put up with!! I really feel for you
You need to get medical advice.
I hope you feel better today. Could you be Ovulating?I would be in agony when my Ovary was trying to Ovulate.
Please get in touch with someone.You can't risk rupture,especially with you being diabetic also.
Take care x
maryvee dobb34487
Posted
I have tried to manage as usual today but am pretty uncomfortable
I think I may be ovulating as I saw a little egg white cervical mucus on friday and then a lot of it Saturday. It's 13 days since my period started so maybe it is ovulation. I wonder if the cysts get bigger during ovulation or something... I am pretty miserable today in terms of my comfort levels. I haven't been able to eat anything and I did try to sip some water but that just repeated on me. I have finished work and got home, did my ironing, and just want to lie down now and zonk out but hubby seems to need a hand. I am so not cooking!!!
BeenthereSr maryvee
Posted
Mary,
I think you're amazing functioning as long as you have! Have you a prescription for pain? I know the cysts are pressing and making you nauseous. I think you need to press to be made a priority and not keep being on hold in the queue. This is ridiculous.
You'll be in no shape for surgery by the time they get you scheduled.
Keeping you in my prayers.
Pat
maryvee BeenthereSr
Posted
Thank you Pat I have been having a really rough few days with the nausea and heartburn. I have started to get a bit of a cough now so I'm just trying to manage everything at the moment.
I still haven't heard from the hospital so I guess when I missed that call, I missed at call until they make another one :s
BeenthereSr maryvee
Posted
Mary,
Be persistant. Keep calling. They shouldn't just pass you over.
The cysts are leaving less room for your stomach. That is causing the nausea and the cough is probably from acid reflux.
Call your Dr. and see if they can upgrade the urgency of your situation. I know it's hard to get anything done at this point but it has been a week and they haven't called back? Unprofessional! You need to see your Dr. or go to A&E. You can get medication to help with the nausea. You need to eat and keep your strength up.
Be obnoxious and call 2 or 3 times a day till you get on the schedule.
maryvee
Posted
My surgery will be on Monday!!!! Just got a call today!! I can't wait!!!!
Any tips ladies about what I should take or expect?
aged-too-fast maryvee
Posted
Glad to hear it! Are you doing a bowel cleanse? Not sure they always order that but it's a good precaution.
Do you know if it will be done laparoscopically and if they will be removing just the cysts and not your ovaries if the cysts are benign? I wish I had insisted on that.
My surgery was 10 years ago. I personally don't recall all the details. I was sedated pretty quickly in pre-op and didn't even see the surgeon that day. I didn't have much pain after surgery but everyone's individual. I think I was in the hospital for 3 days and then back to work in 5 weeks.
I hope all goes well... sending positive thoughts and prayers.
maryvee aged-too-fast
Posted
I have just been told not to eat anything from 6am, no water from 10am and to be at hospital by 11am and which ward to go to!! Nothing else!
They have said they will try to remove just the cysts but the ovaries are likely to be very damaged by the cysts themselves and the surgery. If they find cancer they will remove everything, if not then hopefully just the cysts, both sides.
I am excited...though a little scared!!!
dobb34487 maryvee
Posted
Oh wow,I'm so pleased for you to get a date.I would recommend eating light for the weekend and plenty of water!so have any nice treats or alcohol tonight!!
You'll need comfy loose clothes and baby wipes,pads and dry shampoo are a must.
I'm on day 11 post surgery today and have been feeling quite good the last day or so.Youre first 5 days are crucial to have help around.
Your Cysts are so big that I'd imagine you will feel so much better and comfortable after you get them out!!I found all the surgical team and nurses so nice and caring so I pray that yours are the same.
I'll be thinking of you.Keep us posted and Take care and lots of rest after
😙 Deb x
dobb34487
Posted
P's by Alcohol I meant one or two! I had a couple of Peach shnaps as a mixer for a treat on the Friday before.Im not saying go on a binge,lol.
I barely drink but needed a little one.
Best of luck 🍀
maryvee
Posted
BeenthereSr maryvee
Posted
Mary,
Yay!!!! I am so happy for you. It's a shame you've had to wait so long but wondeful you don't have time to dwell.
Here's some things I learned.
Make extra portions of your favorite comfort foods that can just be warmed.
Deb's suggestions are all thumbs up. Especially stretch pants if you have them. I had shorts with a zipper (BIG mistake).
Take some ear plugs if you're a light sleeper.
Once, you're checked in and sent to pre-op they should talk you through everything. Then it's time for nighty night. I do well on anesthetic. Hopefully you will too. Best sleep ever for me. :-) If not, you might be nauseous when you wake. The quicker you can get up and moving the better. Do not try alone. Nurse will likely get you up and moving.
You will be sore. Even on morphine I was sore but not horrible. I was taken off morphine less than 18 hours after surgery. That was the worst part. Never did anything stronger than aspirin or tylenol before but had withdrawal symptoms. Not fun. They gave me Toredol which worked much better. After 2 days I asked to stop and only medicated at night for sleeping.
I was in 5 days M-F. Once I got home shuffled around well. Tried to limit to one short nap and up and around every hour. Seems to help me sleep at night. Eat lighter than usual because appetite was light. 1st week slow and uncomfortable. 2nd week feeling stronger, walk each day increasing by 10 min. daily. Energy burst 2-1/2 week. Don't get ambitious, you'll set yourself back. Just take another walk.
When bathing shower with your back to the spray until sutures are out. Quick soap and rinse fine but dressing must be kept dry. So remove before and re-dress after shower.
Week 2 itching started, incision healing. Massage with Vitamin E oil, bio oil. Only if incision is completely closed. Otherwise I suggest petroleum jelly, non-irritating on healing skin. Week 3 driving and short errands. Improve each week thereafter. Best part is tummy going away. May take some time but improves well with time . Back to work at week 6.
A lot of the rest will depend on if you keep your ovaries. XXX
I was home alone during the day and did okay but it's much better to have help for the first week or two.
I am so excited this is coming to a close for you! Come Monday the beasts will be gone. You'll be able to focus on healing and returning to your healthy self. HIP HIP HOORAY!!
maryvee BeenthereSr
Posted