I have stage 4 endo (DIE), frozen pelvis, bilateral tubo-ovarian complex so endo through tubes, bowel endo and distortion of the parametrial and cardinal ligaments. And adenomyosis (diffuse and focal).
The ovaries are kissing and described as
'right hand side tubo-ovarian endometriotic complex extends in to the POD measuring maximally 73mm
and
left ovary contains numerous endometriomas measuring up to 27mm'
This will be my first surgery and he has suggested - removal of endo, undo-ing adhesions, removing cysts on both ovaries (with a potential of having one removed), removal of tubes and a potential bowel resection.
I'm a little bit confused if both of my ovaries class as being diseased as it was my understanding they would have to take both if so. Another scan referred to the rh ovary as being substantially enlarged and containing a cyst but he hasn't mentioned this.
My appointment felt rushed and it didn't seem like he'd fully read my notes so I'm feeling uncertain and I'm really keen not to have multiple surgeries as fertility isn't an issue. When I mentioned adenomyosis he had to re-read my notes and then said 'oh yes' and mentioned they may pop a coil in for me and that was that.
Is it enough for me to just be having the cysts off the ovaries and retaining them in this situation?
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Scoutybob
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We all need to be able to give “ informed consent” for any surgery to be able to go ahead. If you have not been given adequate or clear enough information for you to make that decision and any choices clarified then you have to go back to the doctor. Call their secretary and email them explaining why you need to revisit the conversation before being able to give “ informed consent”. They legally have to. Stick to your guns and if you get little traction go to PALS.
You have the right to elect what you would want to be done
I was given 3 options - 1) do nothing (not an option!) 2) medical 3) surgery. I did state I wanted to go for the surgical route given the severity but I wasn't really given any options on surgery. He just said this is what we'll do.
It's more - I'm unsure if this will be enough and if I will end up in multiple surgeries. From all the reading and research I've done, ladies of similar stage often end up in surgery a few time and seem to almost always end up with removal of ovaries and/or hysterectomy due to the endo and adeno.
I didn't feel there was any conversation around that which was tricky. I should have spoken up more.
Continue the conversation with them. That’s what informed consent is, they need to be aware of your worries and concerns. It’s hard to think on the spot !
5 weeks ago I had a hysterectomy. It was also my 1st surgery.
I know its not a cure and endometriosis can come back but for me it was the best decision after 20+ years of pain.
I was only diagnosed 4 years ago . Similar to you I had stage 4 frozen pelvis, bladder stuck to uterus, kissing ovaries with endometriomas. Bowel distorted and stuck in 3 places, ligaments pulled to the left and full of endo and spattered adhesions on pelvic wall. Fibroids. Adenomyosis.
I asked to keep my ovaries as I did not want to go into a menopause. The surgeons tried their best but my right ovary was too damaged by endo to keep. When they went in even my belly button was stuck down with adhesions.
They also had to remove my cervix.
So im left with one ovary.
Prior to my surgery I had tried majority of the birth control pills. I had been on prostrap initially and was then switched to zoladex (which I would never do again, side affects were horrible). Exhausted the majority of pain killers and was on nerve blocks.
Im totally off all my medications now and feel much better. It is an individual choice and depends on what you can cope with. If your ovaries cannot be saved and have Endometriosis which they can't remove, they will take them out.
Wow, your diagnosis sounds so similar to mine! I decided to go ahead with a hysterectomy, bowel shaving, cysts excision on both ovaries, may loose one ovary that is stuck to the uterus if it's very bad. I am 46 and no pregnancy plans. Part of me, i am looking forward to getting my life back after the surgery. Part of me i am scared and anxious in case the surgery won't reduce my chronic severe pain as i have read many others experiences on endometriosis symptoms persisting even after hysterectomy and removal of ovary (as surgery is not a cure unfortunately). My other major concern is the impact on menopause. Will my menopausal symptoms be worse due to my endometriosis? Is HRT even a viable option given my endometriosis? Even though my gynaecologist is fantastic, he is a surgical specialist, who doesn't know much about hormones and menopause.
I honestly wrangled with surgery in my head for 2 years before I said yes. I never agreed with birth control and when I used the Prostrap and zoladex I just piled on weight and my pain seemed to settle for a while and would flare. I've still not lost weight 😭.
I think I reached a point where I was what could be worse than where I am. Honestly my body was wracked with so much pain, fatigue, and mentally gone by the time I had my op I was exhausted.
After the op my kidneys failed, I got pneumonia, MRSA and a severe UTI. The critical care doctors where really concerned and kept saying I'm doing well. I was on dialysis at the time and I just said to them compared to the last 4 years this is a walk in the park. They were shocked and kept saying your not using your morphine, codiene we have stronger stuff if you need it. I said no thank you again the pain I was in before this was a doddle so I just had paracetamol.
Day 5 kidneys started working on their own. I was home 10 days after the op. If I had the choice to do it over I would.
I think my one ovary is working and doing what it should...although I'm only 6 weeks post op now.
We just don't know....
I just left it to fate in the end. Hope you find dome relief. X
Thanks for the super fast response !I hear you regarding the side effects of the pill. I have been on it for over 15 years, ever since my first endo surgery. Weight gain, mood swings, depression....
Sorry to hear of your post op complications. That must have be tough! So glad your kidney function came back quickly. I can't imagine what you had to go through to not take stronger pain meds. So glad you are doing better with the pain level post op. It is sure a hopeful sign for people like me. I had a touch and go post op experience in my first endo surgery with excessive internal bleeding post op and a very long recovery.
Did you have any work done on your bowels, bowel shaving or resection? If yes, how is post op been like for you for your bowel symptoms?
I have no children, never tried it as I always knew it was a difficult road for me fertility wise. Not everyone gets to be mother, that's ok. Took me a while to accept it and grieve it though. This surgery decision wasn't easy for me. Mixed bag of emotions and fear. Still processing it now. Some days I am so angry how much this bloody disease has taken away from my life, career, relationship.
I truly hope your post op recovery will be full and fast. Sending you my love and best wishes.
This is the time I sit and look at my messages 🙂. I think I just adjusted to the pain in the end and accepted that I was in pain. I accepted that I had limitations and I made plans according to what I could do on the day. I kept my mind busy with work. I mentored a lot of people that took away any time I might have had to really think about it.
I'm so sorry about your fertility journey. I've got friends with endometriosis that haven't been able to have children too and I understand your anger at this disease. I have lost some great jobs. Lost friends who didn't understand 'because I look good, nothing wrong '.
I've been a single mum to 2 children. I never planned them, as I was told I wouldn't have any due to PCOS at the time. I actually had endometriosis but it took 15 years for them to diagnose me.
So when I got married I knew the chances would be slim. So we decided we were ok with it. I had my first 3 years after marriage and then second after 3.5 years. My pregnancies were awful I was in so much pain. My ex wasn't supportive at all and I ended up leaving him when I was 7 months pregnant with my 2nd child. Couldn't take the abuse anymore.
Anyway...bowels 🤣😂. Before my op I really struggled with constipation. Once every 2-3 days. It was very painful and felt like a knife was twisting inside. Towards the opening it would feel like lightening and at times I thought id pass out.
It was stuck in several places, twisted on the mri scan it looked like i needed a stoma. When they went in and started excision they could see that it wasn't as deep as they thought. So had excision in loads of places and it put back where it should be.
Post op - obviously due to complications I didn't eat for about 5 days so no bowel movement. I was on stool softeners though. (Very important). First 4 weeks was painful but I was going everyday which still feels odd to me as I am not used to it.
Over the weeks the pain has gradually subsided but I do have a lot of swelling still. Only last week have i noticed diminished pain. I've had a very soft diet of soups and mashed vegetables. Lots of water and yoghurt.
I think my surgical team were very good. Thank you. Im doing really well doctors reading my notes and looking at me 😱.
I think changing my mindset to a positive one has been a game changer too. X
Please take care of yourself and remember 1 day at a time. X
Thank you for sharing your experience with me and others! It really helps me to mentally and physically prepare for my surgery. Especially the practical tips that only people with lived experiences can advice you, when the doctors are clueless. Your timeframe of when and how long the post op pain is really helpful to gage my expectations and prepare my recovery journey. I will have lots of soups and ready made soft food prepared before the surgery 😉Being on this forum, interacting with others here has helped me tremendously. My family and friends don't understand and are not supportive so i felt very alone and isolated.
You are so resilient and strong, raising 2 children by yourself, working, mentoring. I don't have capacity nor the bandwidth to do any of that .
I hope your swelling comes down quickly . I know the feeling as i looked like a pregnant women with the severe swelling in my abdominals for a few months post op 🤣
wishing you get to enjoy life to the fullest after your recovery.
Hi, I was given the choice or 1,2 or 3! Surgery was stated rhat I'd have a hysterectomy, endo extraction, one ovary taken, possibly two and a bowel resection. Wheni asked if I have to have the bowel bit he just said with your symptoms, yes!
No conversation etc!
I have adenomyosis and horrendous periods, and a endometrioma on one ovary the other looks healthy. Then endo on my bowel, POD etc.
You will probably see the the gynecologist again and keep asking questions and get explanations and reasons why they want to do what they plan. I saw a different gynecologist and she said it's my choice about the bowel and how many ovaries they take.
Some don't seem to have time to have conversations but we need to have them for peace of mind.
Hi Can I ask how you have been post surgery having had both ovaries out. How have been with the lack of hormones. Did you have any treatment pre surgery?
I've just started zoladex to try and shut things down and help with pain and periods etc.
I'm wondering if this helps to havenhad your body in a menopausal state pre surgery.
I am dreading it all although I know I can't continue as I am.
Hi Can I ask how you have been post surgery having had both ovaries out. How have been with the lack of hormones. Did you have any treatment pre surgery?
I've just started zoladex to try and shut things down and help with pain and periods etc.
I'm wondering if this helps to havenhad your body in a menopausal state pre surgery.
I am dreading it all although I know I can't continue as I am.
Not in menopause and hormones are fine. Only thing I've noticed is my skin sometimes is dry other times oily on face. My body skin is dry compared to before so need to moisturise more. So overall I'm very happy with the outcome. I have a better quality of life. 🙂
Right up to going into surgery I hadn't made my mind up about my ovaries. My surgeon was lovely but said he couldn't help me with the decision. He said he'd need to remove 300 ovaries to save one person from ovarian cancer. In the end I said yes to take it all but fate had other plans. When they got in there they found stage 4 endo has fused it all together and I'd need an endo specialist. They abandoned the operation. I'm 51 and they really don't want to operate but I'm hemorrhaging all the time without zoladex. The thing I'm most worried about is the bowel resection as this is the most dangerous part - I could end up with a stoma for life. I'm terrified of this. I agree with everyone that you MUST know all the options and all the risks involved before you agree to anything and make sure that they are an endometriosis specialist with a bowel specialist in the room. Good luck. I see my specialist tomorrow. It's been 10 month waiting list but I paid and saw him in November now I'm seeing him on the NHS. I have my notebook ready xxx
I had consultant like that hadn’t read half my notes. Oncology nurse said he was overwhelmed by my questions. I thought if he’s a surgeon should he doing surgery if overwhelmed by my questions. I moved it was worrying plus he was taking a good ovary too in his plan! I just got 2 other opinions he left me so confused. Also it didn’t seem one of the apts he had read all my notes. Rushed too and felt he was rushing me into surgery. You felt rushed and then you felt you couldn’t speak up but that’s not your fault it’s his. Stand your ground. Hugs xx
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