I'm new to this site... Next week I am going for surgery for a endometrioma (10cm) which may be a Borderline Ovarian Tumor. I am nervous because they don't know what it is for sure and one doctor said there is a chance they may have to remove the ovary and do a laparotomy instead of laparoscopy if they get in there and think it is malignant. Also my sister had a really bad surgery experience recently with extreme pain post surgery and I'm anxious about that side of things. I've had 2 miscarriages this year and really want to have a baby
Has anyone here done surgery for endometrioma or borderline ovarian tumor removal? What were your experiences? What is the pain and mobility after surgery like in recovery?
I'd be really grateful to hear your stories. Thanks
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livingwithlemons
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Hi! So sorry you're going through this, it can be scary and stressful going into a surgery and not knowing exactly what state you'll wake up in. Especially after two miscarriages, what a year. Sending you love
I tried to write some helpful points to your questions, sorry it's so long! I've had 3 surgeries for endo now, two included endometriomas in my ovaries (plus everything stuck to everything). It's a major surgery. My first one was scary and came from a scan for extreme back pain that picked up a tennis ball lump that turned out to 'just' be an endometrioma (not cancer). My third one had a risk of bowel/urethra/everything being a disaster - make sure you understand the 'risk'. How likely it is, what they're doing to avoid it. Ask a billion questions!
1. Mobility
Poor! Take it easy - have someone with you during the days for at least a couple weeks to help get food / do dishes/ pick up things you drop on the floor etc (!) There's some guidelines on google about how many weeks to limit movement for. Even if you wake up in those first few weeks and feel like you can do things (reach that plate off a low shelf, make everyone a cup of tea, hang up your own washing) - DON'T. I was unable to move after my first surgery, so I got a bit excited when I didn't feel quite so bad after my third this month....I've been doing too much and healing so so slowly because of it. When they say 'keep moving' - they mean walking from your bed to the toilet, not going for a walk to the shops and getting groceries...keep it small
2. Pain
Discomfort level pain after surgery is normal, but if you're in too much pain you will not be healing. This is what a gynae nurse told me before my 2nd surgery when I told her my first left me barely able to walk for months. At the time they were a bit dismissive, I don't think they understood when I said 'pain' exactly what level I meant. Go back to your nurse/doctor and ask for all the pain relief you think you need - be really specific about what you are able/unable to do so they understand. Get them to write a long term plan if you're worried about addiction, increased sensitivity etc (e.g. if you can only take xyz for 2 weeks, what happens if the pain hasn't gone then?)
If you still have pain after 'healing' - I found pelvic health physiotherapy life changing. I did this for over a year - not a quick process! This was really personal and helped me find how I life my life around pain and how I understand / manage / reduce that pain and it's influence. I won't give specifics, because your body and life is different to mine Here are the generic videos my physio shared with me that I refer back to now I don't see her:
Did you talk to your doctor about NHS funded egg freezing? I've recently been researching egg freezing (writing this up on another question) on the NHS as there is guidance about funding it if a patient has treatment that affects their fertility. Most boards specify this as cancer patients or suggest submitting an application: england.nhs.uk/contact-us/p...
Not specific advice, but the Podcast "Worst Girl Gang Ever" has helped me feel less alone.
Hi Anon1785, Thank you so much for your detailed and caring response. Sorry that you've been through tough experiences yourself. I've really appreciated hearing from people who have gone through something similar. Thank you for the videos and the podcast, I think I'll take a listen when I'm off work! I'm a year 1 teacher and I've requested 2 weeks off work because that's what I was told for recovery but working with little ones is pretty physical... I guess I'll have to wait and see how I do. No one talked to me about egg freezing but I'm really hoping they will not have to take out the ovary. Thank you for all your help and encouragement
Hello, have you had the conversation with them if they are going to look through the whole pelvis and excise any other endometriosis they find? This is important.
My surgery said it might have to be converted to laparotomy, but it wasn't! I think it's always a risk, but chances are that they won't need to and it will be just a regular removal so try not to worry! 💕
Hi Chel91, no I haven't had a chance to ask anyone because I've only had conversations with admin after the initial diagnosis and recommendation for surgery. Would you recommend requesting this? Would that take longer recovery?
Glad you didn't need laparotomy and I do hope mine will just be laproscopic too!
Yes, I would recommend they remove all endometriosis, and that you get a skilled surgeon who is confident in different kinds of endometriosis. This will help improve your fertility most likely! Definitely advocate for yourself, and tell them that if you are having surgery you need someone to remove it all to restore your pain and fertility as it is all linked.
I recently had endo removed from bladder, recto-vaginal, ligaments, and had a cyst removed etc., and I was fine after 2 weeks. It's painful for a few days, but definitely worth it! I don't have any period pain anymore, no bloating, and hoping it will also help me carry a pregnancy to term 🙏🏻 Best of luck to you, hopefully they can sort you out, and things will be better for you as a result! 💗 xx
hi had a 4cm endometrioma removed. I was also told I could possibly lose the ovary or have to be cut open. Neither happened. They also found stage 4 endo and had to remove endo and unstuck my ovaries from behind the rectum area. Personally I didn’t find pain that bad. I left hospital same day and just had paracetamol and ibruprofen at home. I know everyone is different but try not to worry.
Hi Starry1977, thanks for sharing your experiences. Yes I've stoked up on paracetamol and ibuprofen and am having the surgery in a day unit so expecting to be home on the day. I hope I will be as fortunate as you with the pain and simple procedure! Hope you are doing ok now
Thanks. I'm OK a follow up mri showed I also have adamenoysis and extensive scar tissue which is stuck to my colon so still ongoing I'm afraid. I'm trying the mini pill again as the alternatives put in the menopause. The joys . Good luck with your surgery!
I totally understand your concerns, I had surgery for kissing ovaries in June. The complete size was 24cm in the end, I was put onto the emergency pathway in case it was cancer, but made aware they couldn't confirm until after surgery - so I know it's a really traumatic time for you - as well as impending surgery.
My situation is different as I had my ovaries removed as well though.
Recovery wise, listen to your body and do what you can, walking is brilliant for you, do you have walking poles, or could borrow any - they were a godsend to me and one of the best pieces of advice I was given. They eased the pressure on my tummy.
I agree with the pelvic floor physio, this is super important and worth getting referred to a physio.
Take pen and notepad into hospital so any questions you think of you can write down and won't forget.
The biggest thing is be kind to yourself, emotionally and physically it's alot to go through.
Yes pen and notebook SUCH good advice! Helps with being kind to yourself too - no pressure to try and remember anything when you're healing / in pain / on medication.
Hi My_Adventures, thank you for your advice! I will bring a notebook and pen. I'm sorry to hear you had a scary time with your surgery in June, I hope youre doing better now. Yes it's important to keep an eye on mental wellbeing, especially with time off work and lack of routine etc. I do not have walking poles but I do have crutches from when I sprained an ankle in the summer, do you think these will work the same? Thanks
Wishing you lots of luck for your surgery. I had a 10cm endometrioma removed at the end of 2020. It was also an exploratory surgery to check everywhere else and remove what they could. It ended up being a longer than expected surgery and they found stage 4 endo with bowel involvement. Lots of me was all stuck together.l which they freed up. Make sure you ask exactly what they will do before. So check if they are planning on excision of other endometriosis and not just the cyst. They also did a biopsy of the cyst which I’m sure is what they will do for you too, to check what exactly it is.
The main reason I ended up having a scan which showed the cyst was because I had been trying for a second child. I would ask them to check that your Fallopian tubes are clear. It involves putting dye through them during the surgery. Mine were clear but 6 months later one became blocked. I ended up having it clipped before proceeding with IVF.
After two rounds of IVF I am currently pregnant. It’s been a long journey but there are amazing things they can do. Make sure they are aware that you want to preserve your fertility as much as possible. I’m so sorry for your miscarriages, I had one in feb and it’s such a lonely time. A lot of people go on to have successful pregnancies once they have surgery for endo. I found the surgery ok, recovery took a couple of weeks. Just take it really easy for at least the first 1-2 weeks.
Hi Roobs33, thank you for sharing your story and sorry to hear about your miscarriage, congrats on your current pregnancy <3 I have found communication with the hospital to be so difficult but I really hope I will be able to ask questions on the morning of the surgery. Do you think they will be able to check my falopian tubes, is that a straightforward thing I could ask on the day of the surgery without prearranging? Thanks for your help and support
You should have the consultant that is going to do the surgery come in and speak to you on the day. I remember having to sign a consent form before and I had the anesthetist coming in to chat to me too. My consultant said they would check my tubes because I was keen to conceive, I think it’s pretty straightforward they just run dye though them. My sister had surgery for endo a few months after me and i told her the same as she really wanted to conceive. She asked them on the day and they just said it was fine to do. It turned out both hers were blocked, and she has gone down the IVF route also. So fingers crossed they can. I would just make sure you say that you want to preserve your fertility as much as possible. Wishing you all the best xxx
Hi there, I too have similar experience with everyone here. I had 9 cm endometioma and kissing ovaries. I had both laparotomy and laparoscopy. I recovered fine thankfully from both surgeries - had to take the stronger painkillers but only for handfuls of days. Got back to work/driving within 2-4 weeks. The advice that are given by the well experienced ladies here are definitely strikes a chord with me. Hopefully they’re helpful to you and your surgery will go fine. Sending you much positivity!
Hi Balulah, thank you so much for sharing your story and for your encouragement. Do you think they will give me some strong painkillers to take home at the hospital?
I had open surgery last October 2021 and half way through the surgery, there was complications and got abandoned. I have a 18cm cystadenofibroma which is a rare form and I have various others cyst. I’ve had a hysterectomy 14 yrs ago but, I do have my ovaries. I have been given a date for surgery which, will be on the 19th December, not the best date. If you are worried, scared ( this is normal ) they can give you something that, will put you at ease. After the surgery, it can be a little uncomfortable, your body will definitely let you know what you can and can’t do. Just take it easy and your body will follow .
I was recently told that I would be needing similar surgery for a 10cm ovarian tumour that apparently potentially involves both ovaries. I can’t offer any advice since you’re ahead of me in the process but I just wanted to wish you the best. You may have had your op by now and I’m hoping the pain wasn’t as bad as You’d feared. I found the answers here helpful and I hope they were a comfort to you.
Hi Mony_1885, thanks for sharing and sending best wishes. Yes it's been really helpful hearing other people's stories and advice. My op is on Tuesday so still in the nervous waiting space. How long do you have to wait for your surgery? I was told I needed it in July but had to keep phoning through all August and September to get clarity on what will happen/when. I would encourage you to be persistent with getting a date from the hospital, even when it is really frustrating. I hope you are getting the best care
Just wanted to say thanks to everyone for your support pre surgery, it was really appreciated!! Thank God, the surgery was straightforward and I got to keep my ovary, still waiting on pathology but they said it looked like endometrioma cysts. I hope you are all doing ok x
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