The long wait for laparoscopy

[AnonyMousey99]

Hi all! I had my first outpatient meeting with gynaecology yesterday, where I've been referred for a laparoscopy to try to diagnose and treat what's suspected bladder endo. Unfortunately with covid and the current nhs strain the wait times are likely over a year and no further treatment has been offered in the meantime, when even co-codamol on max dose isn't strong enough to help with the moderate-severe flair ups. I've also got the combined pill which doesn't do tons to improve my symptoms.

What would people in similar circumstances recommend, should I look at alternative therapies like investing in better heat products, or should I go to the GP in the meantime about exploring other pain management or hormonal medications?

[Eternalwarrior]

Hello lovely,

I am so sorry to hear that you are struggling and that the NHS waiting list is so long. I was in a similar situation and had to wait more than a year to have my excision surgery. I was in constant excruciating pain and tried different things.

In terms of hormonal treatment, I spent many years on the combined pill, but I cannot take it anymore, as I have blood-clotting problems. Then, I was prescribed the mini-pill/progesterone only pill. That didn't help either, so I was then prescribed Decapeptyl injections for 3 months and then Zoladex after that. The side effects were not nice (to say the least) but it was the only thing that helped me with the pain.

In terms of painkillers, I tried different ones. Ibuprofen, paracetamol and co-codamol did nothing for me so I was prescribed Amitriptyline and in the end the only thing that helped me was Tramadol.

What also helped me the most was a good heat pack, castor oil packs, changing my diet (I followed the low FODMAP diet for endometriosis and went almost dairy and gluten free) and acupuncture. I also did mindfulness and gentle exercise regularly (when the pain let me do it!) But having excision surgery was the best decision I could have ever made!

I found that I had to try different things to see what worked for me and I kept going back and forth with my GP to change the painkillers/medication. I would say every woman suffering from endo is different but this is what helped me.

I hope you feel better soon and don't have too long to wait until your surgery x

[Moon_maiden]

Hi

I think Eternalwarrior has pretty much summed things up. It is a case of discussing with your GP pros and cons and unfortunately trying.

I’ve given reflexology to women with Endo and it improved things, for me it hasn’t done that much, but does relax me.

As much as I prefer alternative meds I am on some fairly strong painkillers. Added Morphine SR Xmas eve and that has helped my appetite so am eating a bit more than before.

If your available at short notice let the hospital know and ask what they do re cancellations. Yours might be more difficult if there needs to be a Urologist as well.

Hope your wait isn’t long

[EndoSuckss]

Along with everything the above ladies said, I also recommend a TENS machine. I had a discreet one that was designed for pelvic pain - Ova+ Tenscare - but there are loads on the market.

[Eternalwarrior in reply to EndoSuckss]

I had that too

[PandaLady6]

Hi, I'm in a very similar situation. I've been on the waiting list since Feb 21 and our only hospital in my area are not doing surgeries at the minute. So I can totally relate. I've had to stop taking the pill, because they were triggering my migraines and one caused me to bleed every day for a year. So I had the coil fitted and it has stopped the bleeding but doesn't stop the flare ups.

I've been given naproxen but doesn't really help and co-dydramol for "bad days".

I hope you have your surgery soon and get some answers. Xxx

[Zunz]

That’s the problem with everyone’s appointment s this covid has pushed back so many appointments that even private patients don’t get to been seen as quick as they use to because the Drs are so busy I was luck that when I did ask my gp to refer me she did give me an option of 4 different hospitals and I selected one which in 3 months got an appointment to see the consultant and after 2 months got the procedure done and still am his patient for follow ups, also I use to call the hospital up just to check and remind them that I’m on the waiting list and if there were any cancellations, wish you all the best x

[Berry_blue]

Hey, yes it’s terrible the waiting time, I was told 18 months and I’ve now decided to go private, not only because of the wait time but you need a specialist in endometriosis excision to do a decent job and I doubt you would get that with the NHS 😕

[Kaurageous1]

Hi all, I have had severe flare ups over the last few months where I had to go into A&E a few times. I was on the max dose of Codeine and it just made me feel sick! I havent tried the mini pill although I was prescribed it as I cant be dealing with side effects (plus I do want children!). Since them, i've been ringing my gyna secretary up and chasing up when I can have surgery. Have you tried calling them asking for any cancellation apps? I have my surgery in Feb (hopefully it doesnt get cancelled). I would deffo recommend mindfulness yoga plus peppermint tea to help with cramps etc plus the heat pads.

[EmB18]

Even if you still need pain meds, it's certainly worth trying some alternative therapies as well to see if it helps manage some of your symptoms until you can get your surgery. I found diet changes made a big difference to my symptoms by taking out wheat, sugar, caffeine and alcohol and putting in more anti-inflammatory foods. Different things work for different people, but certainly worth a try.

[Baobun17]

Hi,So sorry to hear about the waiting list. I was advised to take diclofenac for severe pain. It is inserted rectally though but effective with local pain. That was after my diagnosis though.

I was in a similar situation in regards to being on a waiting list in late 2020, but I changed hospitals because of it and they did an MRI to confirm endo and then I went private for a lap which I got almost immediately (the second hosp offered a date withing 6 months)

Then I self referred to a different hospital that had a specialist endo clinic in Oct 2021 which is 3 hours from where I live. They did an MRI and I needed a second surgery which they offered within 6 weeks on nhs. I think it depends on the area. It was worth to change the hospital in my opinion and the travel. I rang around to check waiting list and where the best endo doctors were. After my self referral I also emailed and rang them regularly to be seen asap.

Hope that helps.