I had an elective section 6 months ago (first baby) and since I’ve been experiencing lots of endo symptoms. I’ve had my first consultant appointment and I’m booked/on the list for a diagnostic laparoscopy- I have no idea if there are any next steps or what to expect though? My consultant said currently a 6 month wait is average for non-urgent diagnostic laparoscopies but my referral was put through as urgent, and he also said I can be on a cancellation list if I can make it in at short notice (which I agreed to) but he said I would just receive a phone call at some point, which makes me a little anxious (I do have autism and anxiety). I have no idea if I’d have to come in same day, if I’d have pre-op etc and just feel a bit in the dark knowing I might not hear anything for months and not having a surgery date or really any idea of how the process works!
On another note I take 60mg codeine, 400mg ibuprofen, 500mg naproxen and 1g paracetamol at my worst (ovulating or bleeding) and the pain still keeps me up at night and brings me to tears but he also said there’s nothing more they can do for pain relief. I would appreciate any experience- particularly with waiting times for the surgery under NHS trusts, but really any advice or endo newbie essentials would be so helpful. Thank you so much xxx
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Lfgells
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Hi, I'm sorry you're in so much pain. Do you have sensory issues related to your autism? If you can cope with a heating pad, then I would recommend that. I was attached to mine at least half of the month (ovulation and bleeding). Have you ever tried a tens machine? I didn't really get any relief from it, but some people have good results. Your pain relief sounds similar to mine, although I had tramadol rather than codeine, and I really needed the heating pad on top of all that.
As for the cancellation list and waiting times, I signed the consent in January, a registrar said I was a good candidate for the cancellation list in July, and then I was offered a cancellation date for late October with 4 weeks of notice. I had a pre-op one week before my lap date. That lap was cancelled shortly after my pre-op because of an urgent case. I then had my lap in early December. I had 6 days notice for it.
I think the pre-op is valid for 8-12 weeks. I don't think you can have an operation without a pre-op unless an emergency situation, so you will have some kind of pre-op. It's highly unlikely for you to have less than a couple of days of notice because you cannot eat within x-number of hours of an op, plus you are supposed to wash with a special body wash for 5 days before, which you are given this at your pre-op, along with instructions on how to use it.
I hope this is helpful and that you get a date soon. Please ask if you have any other questions.
It’s so hard to manage it all and the pain. There is another pain approach and your GP ought to be able to help. A central acting pain reliever may work much better for you, often Amitriptyline is used but Nortriptyline has fewer side effects and also helps with the general anxiety. It’s taken daily . You can combine it with a pain management programme like Curable which seeks to work with central pain syndromes . It’s a useful combination approach and worth using if it helps reduce pain levels overall and has no side effects 😊 My GP gave me a free six week trail pass and I’ve found it a useful resource.
Post partum can reek so much hormonal chaos and lack of sleep can make you feel dreadful. In turn the stress of all that can fuel the inflammation of endo . Supporting the body with nutrient dense foods , sufficient protein , esp Omega 3, Zinc ( we give up a big chunk of zinc in pregnancy to the baby) and antioxidants. I found lack of Omega 3 meant my nerve pain was through the roof and I now use it regularly. Likewise post partum and C section your pelvic floor will have significantly changed and this can cause more abdo pressure with poor circulation. Try looking at @corerecoverypt on Instagram which looks at ways to tackle both the post partum issues and endo from a pelvic floor specialist. Proper pelvic therapy can be a game changer with the pain. Katie Edmonds did a fab book - recipes for such times as well as a really helpful book called “ Heal Endo” which is packed with a number of practical ways to help manage the endo. Not all will be applicable but if you have tools of your own then it can help deal with the sense of zero agency most of us feel when faced with the health care system and its vagaries.
Just a couple of comments. Re medication, non-inflammatories like ibuprofen work best if taken for a few days to build up their effect, so try starting a few days before your period. There are other anti-inflammatory drugs like diclofenac that are stronger, that you can get on prescription. As someone already said there another types of medication that help with nerve pain like amitryptyline. If you are not already taking paracetamol, ( or co-codamol,) then I have always found that a good add-on.
Re the laparoscopy, I wonder if it’s worth calling the Gynae department and asking if they have someone, maybe a nurse, who can talk you through what will happen, explaining about your autism and anxiety.
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