10 weeks post Lap and still in pain!

[Frenchie202]

Hi, I had my Lap just over 10 weeks ago now and my recovery has been very slow and painful with me going back and forward to the hospital but they do not seem to know why I am still in pain. During the lap they removed my right ovary, tube, cyst and ant shedding. When I went back and spoke to my surgeon he said that I shouldn’t be experiencing regrow this already and although there was endometriosis on the left it was superficial and isn’t showing up on the scans. 10 weeks on my periods are still bad, I am bloating to the point of looking pregnant and I have pain on the left side and also on the right where everything was removed. Has anyone else experienced this? The surgeon has now put me on amitriptyline to try and help with the pain but I just feel they are turning me into a zombie, I’m getting headaches and a dry mouth and the pain is still there!

Sorry for the long post but feeling so low and don’t know what to do next.

[hrcArch]

I had my lap in the end of May and haven't seen any change in my symptoms at all - unfortunately, surgery doesn't always alleviate symptoms, which is just awful. I know for me, they were saying to wait at least 3-4 months to really see if it helped, but at 10 weeks, you're approaching that.

Have they looked into other possible causes for the pain? It may all be endo, but it might be something else on top of the endo, too.

As for the pain, I tend to just bring up side effects and ask for help with them. I get increased migraines from the hormonal drugs, for example, so we're having to mitigate those. But I absolutely hear you on being wary/tired of medication cocktails and the lethargy and brain fog they bring, especially when they don't eliminate the pain! I wish I could help on that point, but unfortunately I'm in the same boat there...

[Frenchie202 in reply to hrcArch]

Thank you so much for your reply, just knowing that I am not alone helps. They haven’t looked at anything else, they just keep changing the meds. I am going to speak to the doctors again today and get them to contact my surgeon so that he can move my review forward and hopefully he can explore further although I have a feeling he will try and put me back on Zoladex.

Thanks again for your reply I really appreciate it, I wish you luck on your journey and hope you get some relief from the pain and symptoms.

[hrcArch in reply to Frenchie202]

No problem! Absolutely ask if it could be something else. During my lap, they found PCOS and adenomyosis, but they're also thinking there are issues with my gastro system, since it's right next door to all this and was affected by the endo. If they say it can't be anything else, ask what tests they've done to rule out other diagnoses and how it rules them out. I find that just asking what their method is and why it tells them what they say it tells them is usually fine, so long as it's asked out of genuine curiosity!

[st07 in reply to hrcArch]

Hi, if I may ask: what is your interactions with doctors or what is the treatment for you now that surgery didn’t work hrcArch ? I had the surgery in May and some symptoms have gotten better but some did not so I’m a bit confused about what to do, I have been discharged from the gynae clinic (private) so not sure what I’m meant to do next..

[hrcArch in reply to st07]

Sorry to take a while to respond, I had a bit of a rough day yesterday and wanted to reply when my brian was actually functional!

So, my GP, Endo specialist and I have been going through all the hormonal drugs, and are currently trying dienogest (brand name is Zalkya). Hormone treatments haven't worked for me at all, and this seems to be going that way, but we're testing it for another 2 months before we rule it out, too. They also put a mirena coil in during surgery, which has only prolonged my cycles (bleeding used to be 6 days, now it's every day). They also found PCOS and adenomyosis, so basically if the dienogest doesn't work, we're going to start talking about a hysterectomy, how much to remove, etc. That being said, my symptoms are completely debilitating - I've been unable to work for almost 2 years, on opioids for the pain every day, and now use a cane to get around, so I'm hoping your symptoms aren't so bad!!!

For yourself, if you haven't already, go back to your GP and explain what symptoms are still there and why they are a problem. Don't downplay it - talk about it as if it's your worst day. If you're able to, document it in a journal of sorts, writing down every instance of your symptoms, how long they last, and what medications you needed to take to alleviate them. Be clear about how it's affecting your daily life - things like 'I can't walk around the office at work' or 'I can't work for five days each month' or something. 'I take 2 30/500 co-codamol three times a day' or 'I have a sharp, shooting pain in my right hip every time I put my foot down.' Prioritise clear, concrete statements rather than vague or subjective ones like 'I feel terribly' or 'it's awful' or even 'it hurts to walk,' because everyone's awful is different and they can't help with vague statements because they don't know exactly what's wrong.

And the final thing I make sure to do at every appointment is ask 'What are our next steps?' I make sure I know who is responsible for what, usually by saying things like 'Okay, so for the increase to amitriptyline for the pain, am I needing to speak to the GP about that, or are you including that in your letter to them?' I then confirm with them at the end what it is I'm supposed to be doing and that I've understood what they've said they'll do and show that I recognise things like writing letters take time (I usually say 'Okay, so I'll wait about a week or so before I check with the GP about the letter' so that they know that I know it can take at least that long.)

I don't have experience with private services. I've been working with NHS gynae this whole time, and there isn't a discharge process there for endometriosis because it's a life-long condition. I completely understand going private for surgery to avoid the wait times (mine was 15 months for an urgent case!), but it might be a good idea now to get registered with the NHS gynae. If you can, find an endometriosis specialist through the NHS and stick with them. But in all cases, I would say your current next step is going back to your GP and talking about how badly your symptoms still affect your daily life, then asking what can be done about it. And if they say nothing, ask them why nothing will help, including things like hormonal medications or further surgery, and how/why they've ruled out those options.

I have found that so long as the questions are genuine and out of interest/mutual problem-solving, medical professionals are generally more than happy to answer. If they aren't despite you politely asking, then it may be time to find a new GP.

[Vps1980 in reply to hrcArch]

Awesome response, I’m like this with my gp, I wasn’t at the start, but they aren’t living with the pain, we are xx

[st07 in reply to hrcArch]

Oh wow, thank you SO MUCH for such a detailed response! It made me feel better just by itself

Yes, the bit around private and then going back to the NHS confused me (I was told I can go back to the private gynae at any time if I have issues but obviously that involves the cost/insurance and seems a bit excessive to me..). I will book an appointment with my (new) GP and speak to them about getting an NHS gynae as I suspect they still might need to refer me..

Thank you!

My pain is not as bad as yours and I am so sorry to hear you have it so bad, but I am glad you are so organised with it - really an inspiration to me to get my act together! I hope it works out for you and you will find the treatment that will improve your quality of life, sending you lots of hugs, positive energy and gratitude!