Appointment waiting time!

[GL1906]

Hi, I'm new here. I have been having pelvic pain like burning/stabbing pain for at least 6 months. Started just around few days leading up to periods then was there as a dull ache most of the time. I've had an ultrasound and they found 4 fibroids. pain in last couple of months have been worse and I've been back and forward to the Dr's and they suspect endometriosis. I had the mirena coil fitted 6 weeks ago and the pain hasn't got any better. Finally, 2 weeks ago, I got referred to gynae. A letter arrived today informing me of a 20 - 26 week waiting time! Just looking for advice on how to manage for this length of time! Thanks.

[tmc182]

Sorry to hear you're in pain. That's a long wait when you're in pain. If you're lucky the mirena will kick in, usually takes 3-6 months to settle if it's going to work so give it time. Try taking pain killers and if over the counter meds don't work go speak to your GP, who will be able to prescribe something stronger. If you're still getting regularish periods you could try mefanemic acid/naproxen which are often used for menstraul pain. You could also try heat pads and a tens machine for more natural pain relief. Also eating well and avoiding too much fatty food or carb heavy foods can keep your digestive system working and help ease pains. As silly as it sounds when you're in pain exercise can help, something gentle swimming, cycling, walking. Good luck, I hope your find some relief.

[GL1906 in reply to tmc182]

Thanks for your reply. I am taking Codeine Phosphate which usually keeps the pain at a manageable level but the last couple of weeks have been worse for whatever reason. I have heard agluten fsee dher is meant to help so going to look into that. I am finding it helpful reading other's experiences on here too. I just feel kind of disappointed as I had all my hopes pinned on the coil and I know it can take some time but it seems to have got worse not better. Then I was relieved to get referral to gynae but getting that letter this morning about 20-26 weeks just threw me as the thought of this pain for that length of time is a scary thought!

[tmc182 in reply to GL1906]

I had the coil fitted during my most recent lap 6 weeks ago. This is the second time I've tried it as it's usually a first choice option particularly if you're gynae isn't keen on operating. My first was an 11 month long nightmare. This one is different less bleeding, more pain and the nurse couldn't find the strings when I went for my check! So not pinning my hopes but back to my GP tomorrow to discuss pain reliever options, as I do want to give it a fair trial. To be fair from referral to lap I waited less than 3 months so really can't moan but my endo was diagnosed years ago. Hopefully trialling natural, dietary and medication options will keep you relatively pain free until your appt.

[littlebrownbird in reply to GL1906]

Try asking for a cancellation to get seen faster. Also, consider a menstrual cup, it collects the blood and makes periods shorter, not to mention better for you and the environment 😊. I found stopping using tampons means little or no pain. Worth a try 😊

[Joely21]

Sorry to hear you are suffering, I feel for you and can sympathise I had to wait 2 years from my appointment with gp until my gynae appointment, I would trial and error anything that is offered to you to help with pain relief, if pain etc gets worse keep pushing your gp and keep going back no matter how many times at the end of the day it's your health and that's the most important thing. It's a hard thing to do but when you have bad flare ups rest as much as possible the bodies natural way of trying to heal again watch your diet, try heat pads and walking lots will sometimes help mask the pain I initially found myself out walking anytime of day/night just to try and relieve some symptoms.

I hope this helps x

[littlebrownbird]

Also, I'd recommend the advice of Dr Marilyn Glenville PhD, as the advice I got from her team has been important in my improved manageable periods and better overall health 😊

[GL1906]

Thanks for all the replies. I haven't used tampons for a while due to the discomfort I feel when one is in. littlebrownbird - I don't understand - ask for a cancellation to speed things up? I work full time and that last flare up I was off for nearly 2 weeks with the pain. Hoping not too many flare ups over the next 5 mths!

[littlebrownbird in reply to GL1906]

What I mean by asking for a cancellation is that, tell them you're prepared to come in for treatment at short notice if someone else cancels their appointment or an appointment slot comes up sooner.

No good employer will refuse you time off to attend an appointment at short notice, when the treatment is a step closer to getting you better (and I say that as an HR Manager 😉)

[GL1906 in reply to littlebrownbird]

Ah, I understand now! I stupidly thought you meant to cancel my referral! That's good to know.

[Nadene]

Sorry to hear about the pain you are experiencing. Have you investigated costs for going private? If you haven't, i would recommend you do so. I opted to go down this route and had my appointment and uss with a gynaecologist last Tuesday, went in for a hysteroscopy and laparoscopy last night (6 days later). The outcome, a polyp in my womb, and endometriosis in abdomen. I had to pester my GP for a referral - they first sent me away with antibiotics for a UTI! Good luck!

[GL1906 in reply to Nadene]

No I haven't investigated costs of private yet. Sounds like it would be a lot quicker!

[Hidden in reply to GL1906]

I have had some good stories of people going to Bucharest - a private fertility hospital - it is half the cost of private here and you can claim back on the nhs. 4 people from the uk have gone and successfully claimed back. Dr Gabirel Mitori is the consultant who was recommended to me. I am considering doing it.

[Hidden]

I personally would be ringing the hospital to query this and pushing for an appointment sooner. The NHS is supposed to see us and start treatment within 18 weeks, so telling you it's 26 weeks for an initial appointment is unacceptable. You can also contact PALS at the relevant hospital and see if they can help. Beyond that, I would be going back to the GP and asking to be seen somewhere else. With my initial referral I waited 7 weeks to see the consultant, then another 7 weeks for surgery. I was then referred on to a bsge centre but sadly the wait with them has been considerably longer - I was initially referred in May, saw the consultant in July and had surgery in November. I'm having surgery again in March, which will have been a 17 week wait. You have to be very proactive with this - keep ringing them until you get an appointment. I have had to chase every appointment I've had :/

[littlebrownbird in reply to Hidden]

I'm with @joreilly on this. Being tenacious, firm and polite and getting PALS on side will get you seen sooner. It's worked for me several times

Last week I was told it would be a two week wait to see my GP, but I asked his secretary to pass on a message to him, requesting the referral (and explaining why) and he faxed the hospital with an urgent request (I know, fax !!!)

Anyway, I'm giving them two weeks to respond and in the meantime I've lined up a private consultation (£320). What can you do? Craziness.....

[Hidden]

Can you maybe call the gyno's clinic and see if you can be put on a waiting list or referred to another one 2?

[GL1906]

There's a lot of good advice here.

I've been relatively pain free for a couple of days but the stabbing burning pain in my ovaries appeared again at 4am! I seem to be only getting a couple of days relief a month now!

[Stellauk]

Maybe it is worth considering a private consultation with a BSGE credit surgeon. The cost is around £2-300 depends on areas. Then you can go back on NHS list for surgery. It is the operation that cost a huge amount( 10-20k). By jumping the queue you can cut the wait by several months.

It is probably not the 'right thing' to do but you have to put your health first.

Good luck

[fizzyfo]

I got told the same for waiting time for gyne appointment. I'm in northern ireland. Don't know if prices are different in rest of UK or not. But mone cost £150 for the consultation and another £100 for the transvaginal scan. Which was done at the same appointment. So £250 in total. And I rang on the Tuesday and had my appointment the following Monday evening.

Then my consultant put me on the nhs list for lapo. Which I waited 6 months for cause I couldn't afford it private.

[Caoimhe86 in reply to fizzyfo]

Hi can I ask which hospital you had your laparoscopy at? I also live in Northern Ireland and was told in March by my gynae secretary there is a 2 year waiting list for a diagnostic lap!! I cannot wait this long, in pain everyday.

[GL1906 in reply to Caoimhe86]

Hi, I am in Scotland not Northern Ireland. I now have an appointment for the end of April - that will be around 16 weeks. However, that is just for an initial consultation, not sure what the waiting list is like for the laproscopy - I haven't had that yet. Have you had any treatment? I had the mirena coil fitted in October and I'm taking codeine phosphate daily.

[Caoimhe86 in reply to GL1906]

Sorry I was replying to fizzyfo, she said she is in NI. No treatment...just Co-codamol 30mg, which helps but finding I'm having to take it more. I've also been referred to a fertility clinic as been ttc for over a year. Should have that appointment within the next 2 months. Hopefully your waiting times in Scotland are better than here. Think I might give the Endo support line a call next week see if they can give any advice with the waiting times.

[GL1906 in reply to Caoimhe86]

Sorry, your reply came to me. Hope you don't have to wait too long!

[GL1906]

My boss actually said to call them and ask to be called if any cancellations and she will support me to attend at short notice if required. That is a huge relief! After Christmas/New year I will contact them and look into cost of private consultation. I would only need the initial consultation as, like others, I couldn't afford the cost of the laparoscopy. I have already had a transvaginal scan. I'm also going to see if gp can do any other tests that would rule anything else out in the meantime so not to waste time once I get to gynae. Also going to start on a gluten free diet to see if it helps. Any flare ups between now and then and I will go to a&e if really bad as hopefully that will speed things up. I'm not great at being proactive when it comes to myself so realising I need to speak up and push more to get further!

[littlebrownbird in reply to GL1906]

That's great progress. Don't go to A&E (that is for emergencies only and they are so overwhelmed at the moment, also, they will refer you quite rightly back to your GP). You would be better off asking your GP to make an urgent referral to a gynaecologist who can give you the specialist assessment and care you need.

Good luck 😊

[Hidden in reply to GL1906]

Hi, I went to A&E and it helped enormously as they sent me straight to gynae ward in a hospital and meant i had a scan within a day and has meant instead of 6 months waiting, I have a laproscopy within 6 weeks. You have to look after yourself and if you are in that much pain then go to A&E, and demand more investigations. Its not ok you wait and suffer and just go to the GP who cant do anything aside from pain killers. Men wouldn't tolerate waiting this long in severe pain, women shouldnt either.

[Stuart_Burto]

I've just had the more natural coil removed but I am still getting stabbing pains. Not sure if it's where it was pulled out. Waiting for gynaecology also on the list for womb investigation also not sure how long the waiting list is. Not even sure if I am on the list yet. Worries. Now stabbing pains. No periods ..

[Stuart_Burto]

The mirena coil. .