Broken. After being dismissed by everyone the wait was finally over. The promised laparoscopy. Two ovaries were found fixed to the ligaments /back of uterus. They managed to unfix them both but couldn’t continue with the operation due to the extend of the damage. I’m now being told I have to await another MRI to show the extend of the damage to major organs. Once MRI has confirmed I will then wait for a follow up appointment. At that point be referred to a specialist for an appointment, to then be put on another waiting list for surgery. I know this will take years. I’m angry, upset and frustrated. I know how hard I will have to fight again. I can’t imagine continuing in pain everyday, struggling to pass bowel movements. They have suggested ‘switching me off’ and putting me in early menopause for a few months. I’m 31 years old. Has anyone done this? Did it relieve symptoms? My argument is it won’t unstick everything so how will the pain improve.
Post Laparoscopy : Broken. After being... - Endometriosis UK
Post Laparoscopy
Hi
It’s mixed feelings I know, glad to have answers but at the same time ones that aren’t so bad. Sorry it’s so bad at the moment.
Make sure when they refer you they do it as urgent, once the referral has gone through also ask GP to write to the new consultant for it to be urgent. Sometimes it can help.
I tried the injections but didn’t work for me, they can be successful with some, unfortunately we don’t know until we try. If you are looking to have children make sure you bring that up with consultant as well, I’ve no idea if it makes any difference with the injections. The only thing it might do is calm the Endo and reduce pain potentially. If you’ve lots of adhesions it won’t do anything for those. Make sure MRI covers abdomen not just pelvic area.
What medication are you taking?
Thanks for taking the time to reply. I wasn’t in a great place yesterday but feel a lot stronger today.
I will get straight on the phone next week chasing everything up, thank you for the tips.
You’re right, everybody is different but I appreciate hearing other people ls experience so thanks for sharing.
I’m only on the contraception pill at the moment which I take for 3 months then have a break. If I take it all the time I bleed everyday but I’ve found having a break every now and again helps. I went on this to help with the periods.
Hope you find something that works for you.
That’s good you are feeling better today, you’ll be tired from op and that can bring you down, including effects from anaesthetic etc.
Let us know how you get on with talking to GP etc.
Does the pill keep the pain down? That’s great if it is, but don’t be afraid of asking GP for meds. If they start to go on about opioid use mention Nefopam, it’s a pretty good painkiller but non opiate, they avoid it as it’s more expensive.
Thank you, various ops have helped a bit each time, but I put up with things for many years without doing anything and that was detrimental overall.
Hi, it’s a shame they didn’t MRI before doing your lap, some appear to be doing this pre and some don’t. But those that do tend to identify issues which general gyne aren’t capable of tackling and as such move you straight on to the specialist.
My last general gyne referral was November 2022. Only this year was I referred to a specialist after the MRI showed organs were tethered together and deep infiltrating endo on pelvic walls and ligaments.
Depending on the BSGE centre, it might not be years. There is hope. They are seeing people based on urgency level, once the referral has happened I would contact the consultants secretary to reiterate your daily symptoms and impact to life. I had surgery with the specialist 1st August and unfortunately I am still having problems. I went in assuming excision and detachment of organs would would fix me and all my problems but unfortunately, I have adenomyosis too and it’s looking like that might have been heavily contributing to my issues.
I’m currently waiting for an appointment to discuss switching me off too( due to Adeno) I’m 33 with no children so it’s not ideal but I’m bleeding everyday and can’t carry on like this. I feel like it’s constant trial and error finding what works for you as we are all different, but it’s worth it if we can get pain/bleed free days.
You’re not alone. Keep fighting xx
Thank you so much for taking the time to reply, this is all very helpful.
My last MRI was last year which didn’t show anything, I’ve had a normal CT scan and a recent ultrasound that only shown the one ovary stuck. Whether that’s because they were just general scans, this one might be different as they are specifically asking for an area to be checked, who knows. I’m learning all the time. I’m so thankful they did what they could during the lap and didn’t take any risks. Maybe I’m looking at the next bit to negatively on past experience. It could be different this time.
I’m so sorry you are having trouble. It’s awful. I really do hope you find something that helps. I don’t know anything about adeno so scared to say the wrong thing but if it’s any help. I managed to conceive and carry full term following cervical cancer and endometriomas on both ovaries. It took two years of trying. Do what’s right for you at the time.
Thanks again.
hiya, I’m so sad to hear your story, it must be so difficult to navigate the disappointment and the worry about pain. You must be exhausted, hugs from me. Everyone’s story is individual to them but I think we all have to fight and we are with you 💪🏻💛🫶🏻
I have been “switched off” and it’s really helped with managing pain levels and heavy periods. Your ovaries won’t produce the 3 hormones that ovaries make and the thinking is that this will deprive Endo of oestrogen and stop its growth. (My Endo adhesions have shrunk a bit according to my latest MRI).
I really feel for you in all this. Wishing you all the best lovely 💗💪🏻💛
Hi,
It’s a constant struggle, I feel your frustration
I had the injection into my abdomen to put me in the medical menopause. It was the hospitals final attempt to calm my bleeding as all else for me did not make a difference and had failed. Until my next surgery.
For me it has done that, stopped constant bleeding and helped with the period cramps and intense pains in abdomen. Yet the mood swings were initially extreme, hot flushes are not nice and I still experience the endo pains elsewhere, especially legs… Uncomfortable The injection will not repair damage already done but for a time slow down / calm the endo is my understanding
🤍
I had 6 months of zoladex last year, it slightly helped my pain ease but then I had a lap and my cervix and bowel were stuck together so the pain may also have been the adhesion, it was really helpful not having a period too. I'm sorry your having a hard time, I am too. Hope ur feeling somewhat better soon x
Hi im going through the same thing. Had lap surgery in january to remove a endemetrioma and suspected endo that was found on ultrasound. Got told after surgery they drained the cyst but couldnt do anything due to how severe it was. I had a mri 6 weeks later and 2 week later i had the results and saw tge pictures of my surgery. Ive got severe endo, adeo, 2 5cm endemetriomas, loads stuck to my back wall and in pouch of douglas, my ovaries are kissing but with bowel down the middle. I was devestated. Since march ive been on zoledex while they had a mdt meeting and may was put on the surgery list for a full hysterectomy. Its a 12-18 month wait, the zoledex puts you into medical menopause so im on hrt aswell.
I understand how u feel its such a long waiting game and what our body has to go through, its made me really bad mental health and anxiety.
I will be 38 in 2 weeks
I just want to give you a big hug.
Hi i have adenomyosis, endometriosis, cysts and fibroids, I'm on prostrap best thing i ever did, no more pain or heavy bleeding. Hope you get things sorted out quickly, sending you a big hug x ❤️🤗
Any chance you could go privately? I couldn't stand seeing my daughter in so much pain so I just paid for her to go privately.
Hi I have been put into early menopause twice (I am 33) it helps whilst you are on it because your body isn't producing the hormone for the endometriosis to continue to grow, however it doesn't treat where the endo and lesions have already formed. However you will have symptoms of menopause, the sweats and migraines were no joke. Also I was told last time that it would take between 12-18 months after my last injection for my periods to return but they actually returned the next month
Struggling to cope 😢
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How long is the wait?
