I have a (patient led) follow up on Tuesday and due to the seven years gaslighting whilst fighting for diagnosis, I’m just wanting a bit of external confirmation that I’m not being stupid requesting this appointment and symptoms I’m still having aren’t normal.
I had lap 1st August. Widespread endo removed from pelvic walls/ligaments and ovary detached from uterus/pelvic wall. I also have adenomyosis. I’m currently taking the combined pill back to back and breaking every three months.
Since, I’ve experienced sporadic flares of pain which are now less frequent however, I still suffer with constant lower back pain, which wakes me nightly unless I take codine before going to sleep, heaviness in my abdomen, bloating, pain in pelvis after standing/walking for too long, digestive issues (same as before), pain during/post orgasm (makes me feel nauseous/cannot be upright) and light bleeding daily. I’ve also had constant hot flushes since surgery which is really odd for me, has anyone else experienced this?
It’s perfectly ok for me to have requested a follow up based on the above right? Im mentally constantly questioning myself/worried I’m being dramatic and just don’t know what’s normal this long after surgery.
As always, any advice would be hugely appreciated. X
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Tangoandmax
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You are completely justified for having another appointment! You are in pain and therefore need help. I asked for a follow up appointment after my surgery simply because they found nothing and I wanted answers. The gaslighting is real but so is your pain. I hope you get the help you need!
Hi, so sorry you’re still in so much pain. I think that you’re doing the right thing by asking for an appointment (I’m recovering from my Lap and about to ask for a follow up too!). The best thing I’ve learned on my journey with endo and with doctors is to keep advocating for myself. I don’t take no for an answer. If that doctor isn’t helpful, ask for another. If they are making you feel like you’re being dramatic, that’s on them not you. It’s SO exhausting having to constantly fight and be dismissed but you will find someone who will take you seriously and help. Best of luck x
Thank you for your help! I’ve had to fight so much to get here, the battle goes onn It’s jarring how even with a diagnosis it’s still difficult. I had the appointment yesterday and just came home feeling a little shellshocked/confused. My consultant told me to stop the hormones I’m on, as I’m bleeding every day along with the hot sweats, she said to give it a break and assess after eight weeks. I asked about regrowth but she said scientifically there’s no proof it does help hinder that (which completely contradicts everything they said before surgery) I’ll also be referred to their pain specialist, not sure what that means/will achieve, but I guess we just have to keep trying things eh!
I’m so sorry to hear you are still in so much pain 3 months on from surgery 😢 I would 100% be requesting this follow up and think you’ve done well to hold off for this long to be honest. Can’t say I experienced hot flushes after surgery but mine was less extensive. Really hope they can reassure you and provide direction for symptom management going forwards. Good luck x
I think I just naively assumed surgery would fix me. Management seems to be the key word, feel a little sad about it all to be honest but thank you for your response, I really appreciate it xx
Ahh, I can feel the heaviness and disappointment in this 😢 it’s so unfair that it doesn’t just fix it for so many of us and it’s so frustrating that that’s generally the message we’re given by medical professionals, making it even more difficult to process the reality when it doesn’t. It is so complex getting your head round the idea of having a life long condition when the systems aren’t there to support us in that way like they are for other life long conditions like diabetes. I’ve seriously considered and haven’t ruled out seeking specific therapy to work through it to be honest. Were they at all helpful yesterday or not? Xx
I think maybe I hadn’t even processed it might not worked. There was too much hope.
She was really sympathetic I can’t complain really not about her attitude or whatever but she’s told me to stop hormones, to see if it’s stops the daily bleeding/hot sweats. I questioned it as I’ve been constantly told remaining on hormones gives you best chance at hindering regrowth. She very frankly said, whilst it’s suggested - scientifically there’s no actual proof of it working, if it’s going to grow back it’ll grow back. Which felt contradictory to what other doctors have told me.
She’s referred me to their endo team pain specialist, then will review symptoms after eight weeks without hormones. I guess I’m struggling with the trial and error approach. It’s super frustrating the lack of research/treatment options! I just feel really old beyond my time, I attempted a gig at weekend (friend booked standing tickets without thinking) but after being stood for thirty/forty minutes the lower back pain/bloating was just too much. I’m 34, it’s all very depressing.
I’m thinking I might try the AIP diet/and read the Heal Endo book, I feel completely out of control just sick of living like this. Maybe if I try to take control to see if that helps I’ll feel like I’m not just low/doing nothing about it x
Completely understandable that you wouldn’t consider the possibility of it not working, how could you when there was so much riding on it and when we are told it should work. Plus that hope served to get you through a difficult time so it was needed.
Pleased to hear they were sympathetic, that’s something at least, and that they’ve offered to keep reviewing. Completely understand the fear of coming off hormones, I’m too scared to come off mine and to be honest who knows if they’re even working, I personally wouldn’t be surprised to be told in a few years time they’ve now found out they were the cause. It is so incredibly frustrating to have to like you say take a trial and error approach because of the lack of decent research and it is so hard to keep trusting them when they all constantly contradict each other because of this.
The old before your time thing is so frustrating too, I’m 32 so similar age and my body and brain just feel exhausted most of the time. Had to go and lay down in the toilet at my friends wedding because I couldn’t bare to stand up I was in so much pain.
The heal endo book got me out of a pretty dark place you know, something about reading that some of this might be within my control I guess gave me that hope. And I do think for me a lot of that stuff has really helped. It’s not quick, and I still have flare ups but I feel much more in control and know I can get things back to a manageable state by upping my attention to my diet, life style choices etc. x
It’s just hard all round, I’m struggling with getting friends/family to understand too, they’re mostly like are you all sorted now, nope. At least we have this platform to support one another, as we all understand the complexity/difficulties.
I’m not even much of a social person but I’m getting worse, home feels like a safe space should I need anything/have sudden symptoms I can’t deal with whilst out.
I’m just going to give it a try, coming off them. I fear if I don’t cooperate they’ll just fob me off 🙈 I missed the comment in your previous response re. Therapy. I’m currently having CBT due to health anxiety, overthinking it’s helped find ways to stall/redirect my brain but not really changed my outlook/overall mood, maybe another couple of weeks lol x
Yeah it is you’re right. Ahh the classic, ‘are you all sorted now?’, I had that too haha it’s so tough getting people to understand and I don’t know about you but I get bored of talking about it too. And yeah re avoiding things, I’m a massive foodie, cooking and eating out is my main source of enjoyment and I’m genuinely often scared to go out and eat now these days because it’s so likely to trigger my pain. It’s so bloody tough as you say, all of it, but at least we know people in this space understand and we’re not alone in it.
I think it sounds sensible to give coming off the hormones a go if they specialist advised it, it’s just so anxiety provoking to change anything isn’t it. Praying it makes a difference for you and that maybe even things still will settle in more time from the surgery.
Great you’ve accessed health anxiety CBT I think I need to do similar to be honest, had a complete break down the night before my last consultation and I’m even nervous about smeres now, and have one tomorrow! CBT can take some time to shift mood as it’s a case of embedding the new ways of thinking so hopefully you’ll see that difference too. I am a psychologist for context, if I could just CBT myself that would be great! X
Is it weird that you being a psychologist that thinks CBT would help you, is a comfort? I’ve tried to go in open minded but it’s literally light fighting myself, and when I’m already exhausted it’s a lot. I have another session tomorrow, just going to keep trying!
Ah the dreaded smear, they’re not the best with endo. Sending all the positive thoughts it’s smooth sailing, (look at me finding some positive!) lol.
I love eating out too, I have stomach issues (due to endo - they think) so yeah it’s not easy for me to do that now either. I think AIP might really help, even if it just helps gut health that should make me feel a little less like a zombie.
Sending best of luck for the smear. Let’s will It’ll all be ok into existence 🤍 x
Oh yeah CBT has quite a good evidence base so I would definitely do it myself, but it is a lot of personal work outside of the therapeutic space too so it is a lot on top of a chronic pain condition. I’ve accessed other types of therapy but never CBT, just because of what was available to me, but have been thinking more about seeking out CBT for health anxiety.
Thank you, ahh yes some positivity it’s good to find it sometimes, I started keeping a gratefulness diary before bed every night actually to try and find mine more when things were tough and that definitely helped.
Deffo the less brain fog fatigue etc is the main thing I got from nutrition and life style changes but also in time more control over pain but I don’t stick to a strict diet or anything as don’t want to cause myself stress, mostly increasing anti inflammatory foods and generally avoiding triggers. Zoe Instagram has some good gut friendly recipes for granola and stuff.
Yes, let’s will it, it’ll all be okay 🙌🏻 and when it’s not, that’ll always be temporary x
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it’s good to find it sometimes, I started keeping a gratefulness diary before bed every night actually to try and find mine more when things were tough and that definitely helped. 
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Post-lap gp follow-up, prostap??
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