I just recently got diagnosed with endometriosis and adenomyosis and my gyny specialist wants to do robotic laparoscopic surgery to remove the severe DIE and ovarian cyst. I also have adenomyosis and I’m just constantly in pain. Simple daily tasks are too hard to bear most of the time and I’m just at my wits end. I’m still working (remotely from home) but I’m just spent. I bled for 74 days straight, to the point that I went out and bled through my outfit 1 hr after changing my towel. I just need a respite and some advice as to how you warriors survive as I genuinely feel like I’m sinking.
I’m also terrified of the surgery and don’t know what to expect going forward. There is talk of me losing my left ovary and my right ovary also has cysts. Ideally I wanted a baby with my partner in the next two years but this now feels like a pipe dream. Everything is so unknown and I have no quality of life or control over my life. I’m just feeling lost and could use some help and peoples experiences of surgery and just general ways to get through the day.
Thanks in advance 💛💛
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Kieraface
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I am so sorry to to hear how you are feeling. You are not alone as there are many of us out here who feel the same, out of control and unable to live like others, plan and look ahead. I cope on the really bad times by trying to take the pressure off and just taking it hour by hour with no expectations and acknowledging the small wins each day. Sometimes this can be as little as getting showered and hair wash, but it’s a win. I also know from years of living with endo and adenomyosis. It’s a roller coaster and when there are better times I remind myself in the next flare up to think ‘this too shall pass’.
Give yourself permission to stop and rest when you can and don’t feel guilty, watch a favourite movie or box set, comedies that make you laugh and take you away from the thoughts going around your head.
Learn to let the unimportant daily tasks go and set small achievable goals each day, housework is not as important as you are. Take some control back by saying no, I’m resting now.
As for the surgery coming up it is normal to be worried but you will find you will take it in your stride under the guidance of your medics, again one step at a time. The most scary bit you will be asleep for so not ever remember. When the thoughts come into your head notice them and refuse to let them lead you down any further, I stop mine by purposely focusing on something else like breathing exercises. Also you say you are having robotic assisted surgery, to my knowledge it is skilled and progressive surgery so you are likely to be in very good hands.
I also say out loud about five things at the end of each day I am grateful for such as the fact I’m diagnosed and on a waiting list, in a country that has free healthcare, have access to strong pain meds, thankful for a nice cup of tea, hot water bottle and a comfortable bed to curl up in when in pain.
I know it all seems so unfair, and it is, but you must lead your life with self care and not compare with what others are doing. Give yourself permission to not be wonder women, stay off social media where we are bombarded by images of others supposedly perfect lives and know you can get through this.
Put your energy into the thoughts of hope for your surgery outcome and be kind to yourself, you are amazing coping with this. You might feel drained and weak now but you are strong, the evidence of this is that you have dealt with so much more already in life than many ever will. Strength is not in being fearless, it’s about finding a way through, and reaching out and saying I need some help here, which you are doing. I think you are amazing holding still managing to work too.
I wish you all the best for your surgery and recovery on your health journey.
PS, I’m too awaiting a very big surgery in the next few months, maybe robot assisted. It will be my 11th operation, I’m 56 now! I also managed very well with one overy for many years. I’m still frightened even though I know the drill so to speak but feel relief that it’s experts in endo who are operating on me as like you I can’t go on much longer so debilitated without medical help. I’m hopeful that once through it life will feel a lot brighter.
All best wishes to you for all good things to come
thank you so much for taking the time to reply to me.
I’m so sorry you are experiencing this pain also. I wouldn’t wish this on anybody.
Work is incredibly tough, but they are letting me work from home which takes a bit of the pressure off. They have also done an occupational health assessment and are allowing me extended breaks and need to send me some equipment to make doing my job easier so I’m incredibly lucky to have such a good employer.
I do count my little wins. This morning I managed a shower before work which is the first time I have done so in months! It was so nice. Granted I’m exhausted now but it’s still a win to not feel icky all day until after work finishes haha.
I hope you get your surgery soon and your pain subsides afterwards. I’ve been told that my surgery should improve my life by around 70% but it might still be that I experience heavy prolonged bleeding and pain due to the adenomyosis. I am also very aware that even if they get most of the endo that it can come back. I’m very concerned that this is going to be something I have to battle through until I have a hysterectomy but I’m just not ready for that yet.
At present the norethisterone has stopped my bleeding for the first time in 74 days I’m bleed free and it’s an amazing feeling, however I still have bad pain. Due to the kink in my bowel I can’t take codeine as it will cause more bowel pain, so I’m living on diclofenic and paracetamol. Still got pain but at least I can move a little more now without crying constantly.
Please let me know how you get on with your surgery! Take care of yourself 💛
I wonder if your GP could prescribe you some stronger pain meds? I know it’s not good to be on the strong ones but I have tramadol and top up oral morph for the really bad times. The oral morph does cause some constipation, like you I have bowel endo, but I keep it in check with fibro gel and dried apricots. I don’t like taking them at all because of the addiction risk and my GP moans at me for under dosing but at the moment while waiting for total pelvic clearance hysterectomy and bowel resection I’ve given in and will address tapering off pain meds once the operation is done.
The one advantage of being in hospital for surgery is you do get the best pain relief going post op, so as they say every cloud.
70% improvement sounds good, you’ll be in a much better place. Just don’t overdo it in recovery and beyond, listen to your body, no pressure, you’ll get there.
Like you I resisted hysterectomy for so long and made it to menopause without but now I wish I had had it done in my 40’s as I’m one of the unlucky ones again who has endo active after menopause and it has now become the best decision for me. I also went through breast cancer treatment 6 years ago so wasn’t strong enough for the hysterectomy then for some time after.
I don’t bleed anymore which is a blessing but the pain, bowel and bladder issues are making life impossible all with full on menopause symptoms too. I had far too many other ops, 10 in all to put off menopause and ended up with so much scarring inside that it’s all stuck together and a mess in there now. I’ll be glad to get rid of it all. I’m lucky enough to be under the care of a specialist endo centre who have been regularly mri scanning me so very fortunate for the care I’m getting.
I know it’s hard but try not to speculate about the future, we are all individuals who will have different journeys. I wish I hadn’t worried so much and just embraced the better times in my life when the endo was more controllable too. It sounds like you are where you need to be on a list for surgery but I do feel you could have better pain relief options.
As for having children, if you want a family your diagnosis will be a positive as you will hopefully get fertility help if needed and not be dismissed like I was years ago by uninformed doctors.
My mum had endo and she was lucky to have 2 children naturally conceived, of course endo was definitely not recognised in her child baring years, things are getting better all the time with treatments so please try not to torture yourself like I did with all the what ifs!
I also have a specialist endo nurse specialist who I can contact who is amazing and is always there for support and will be someone I know when I’m in hospital, maybe it’s worth calling your consultants administration team to see if one is available for you, it really helps and I feel you might really benefit.
Please feel free to message me if I can be of any support to you, you are not alone. I feel so much for all the younger women on here as I’ve been on the long journey too and if I can offer any support it makes all the hard times I’ve been through at least count for something.
sadly I’m allergic to oramorph so can’t take it 🙈 it causes difficulties with breathing and I vomit horrifically! So I’m kinda stuck with the pain meds. I also need to be compus mentus for work as I can’t have any more time off as I’ve been put on an attendance review plan as I had 14 days off in June and 4 in July so can’t afford to have super strong painkillers.
I’m lucky that I have two beautiful children already but my partner has no biological children and we would like to have one of our own together but he understands this may not be a possibility. It leaves me feeling incredibly guilty that I may deny him the opportunity but he’s been very supportive and says I’m more important but I still feel guilty
so sorry to read this. I’m having similar surgery soon.
Might be different as I already have a child but I was put on zoladex injections for 12 months and now I’m on a daily pill that you don’t have a break on so I don’t have periods. Could you ask for something like these to help stop the bleeding until your surgery?
They have given me norethisterone and told me to take it every day and it has finally stopped the bleeding. I’m sorry to hear you’re having a similar time of things. I hope you’re able to get the surgery asap and start feeling better soon 💛
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Worried about the pain...
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