4-5 month waiting list - Endo found for 3rd time

Hi ladies, I am new here and looking for some advice.

A bit of background first: I am 38 and have a 5 year old son. I have previously had 2 laparoscopies, one in 2006 and one in 2013. The second was done a year after i had a miscarriage. Both found endo and I had treatment done there and then. I don't know what stage they were at as I wasn't overly informed at the time and i didn't think to ask.

After the 2nd lap, i went back to my GP 18 months later as my symptoms had returned and i was refused to be seen at gynae as they said the endo couldn't have returned that quick so I have been putting up with it until a few weeks ago when i went back to my GP as the bleeding and pain has gotten worse since January this year as welll as starting to pass clots and I was having to take time off work.

My GP was reluctant to refer me to gynae straight away so instead sent me for a trans-vaginal ultrasound which I had done 2 weeks ago. It was very painful and the sonographer told me she couldn't see my left ovary because of a "mass" and this was what was likely causing me the discomfort. She said that she was going to go back to my GP and recommend I am referred to gynae which my GP has done and I received a letter from them at the end of last week which said that the waiting list was 16-20 weeks and I would receive an appointment in due course.

I feel is a long time to wait so i went to my GP yesterday to discuss the results and options if I wanted to go private. She has put me back on the pill and prescribed Tranexamic acid and Mefenamic Acid which I suppose will help in the meantime but I think it is really just hiding the symptoms and the problem.

I asked what was found on the ultrasound and she said around 5cm of suspected endo on my left ovary and polyps in my uterus.

With regards to going private, she said it was personal choice but could be very expensive in the long run and probably wouldn't get me on the list for another lap any quicker, maybe cut out a few weeks of waiting but that would be about it.

I feel now i'm sort of stuck in limbo and having to wait such a long time to be seen. I am constantly in pain even with painkillers.

Has anyone experienced a similar sort of thing? Would anyone know what sort of stage my endo could be at going by what the GP said?

Any advice you could give would be great!

Thank you!

8 Replies

  • Is that a 20 week wait just for an initial appointment? Crikey, that's poor. Do you know if you have been referred to a BSGE centre? If not it might be worth checking (there's a list, you can google it) and going back to your GP and asking to be referred to one. They really have messed you around.

    FWIW I don't think the pill and painkillers mask the symptoms as such, they're about giving us quality of life in the short term because the months waiting for appointments and surgery do count. They're time we can't get back, and if we can possibly have less pain in those months, we absolutely should. My GP was unwilling to prescribe anything other than the mefenamic acid I'd been taking for years (which at that stage wasn't nearly enough) and I was left in dreadful pain for most of last year while I waited for appointments. This year I've had all the drugs (literally all of them) and it has at least given me some quality of life back.

    hope you get seen soon. x.

  • Thanks for your reply. Yes that is 16-20 weeks for an initial consultation. It really is bad isn't it!

    I've googled the BSGE centre and there are only 2 in Scotland, both out of my region so I doubt they would refer me to either of those. Plus each one is at least an hour and a half away from me.

    Are you still waiting to be seen? It sounds like you've had an awful time too x

  • I am under the care of a bsge centre in London now - had a lap back in January with a general gynae locally but unfortunately the endo he found was too severe and he didn't remove any of it. I'm due to have another lap at the endo centre in November so they can fully assess the disease before I make a final decision about whether or not I am ready to have a hyst + removal of ovaries which they will then do early next year. It's an hour's travel to get to London from here but the dr I am seeing there is in a totally different league to the gynaes at the local hospital. It might be worth contacting one of the bsge centres and seeing if you can talk to one of their nurses about what they can offer treatment wise even though it is a hassle to get there.

  • What were ur symptoms and can you describe how u insides felt and going through the same thing but I'm waiting to have a lap

  • I'd always had awful periods, right from the age of 13. Pain, upset stomach, heavy bleeding with big clots. I was given mefenamic acid from the age of 15. In my mid 30's things started to get worse - I would bleed old dark blood for a week before my periods started. Bleeding was so heavy I was regularly having accidents. The pain had also changed from just cramping in the bottom of my tummy to an all over pain, in my bowels and bum and down the back of my legs that would start when my period did and linger for sometimes over a week. I would feel like I'd been kicked in the guts. I then started having problems with constipation. I was passing lots of mucus from my back passage and also bleeding. GP dismissed it as IBS and told me that it was normal for periods to become longer and heavier and more painful when you got older. I also had pain during sex, but this was normal for me. In early 2015 the pain ramped up a notch - I passed out at a swimming lesson and then a couple of months later ended up in a&e with a bout of pain brought on by sex that was initially thought to be appendicitis. I was very anaemic, but the GP had ignored this. When the pain kicked in, it would feel like something had gone bang in my lower abdomen. I also had odd discomfort on my right side, and my cervix had moved. I later learned that this was due to adhesions sticking my uterus over on the right hand side and pulling everything into a distorted position. I had also lost all my usual signs of ovulation (popping in my lower abdomen, cervical mucus etc). I was exhausted and constantly felt like I had a virus of some sort. Frequent bouts of cystitis and thrush. Fainting. Weight gain. I had asked the GP if it could be endo, he said no, I didn't have the symptoms. Idiot.

  • I really think a private consultation with the BSGE listed gynaecologist is the best option. You already had two operations previously and yet the endo has come back.

    For £200-300, you can be seen within a few weeks and have a proper discussion. I can't imagine anything is worth more than one's health.

    I had an operation recently. One of the incision wound is weeping and inflamed. When I called GP was told no appointment for 10 days! By then a minor infection could turn nasty. Contacted the consultant PA, the consultant called me back within 30min and dealt with it.

    It is ashamed we pay so much tax for NHS but when really need it, have to go private instead. 😡

  • I was seen within a few weeks on the NHS for free. The private hospital that did my lap back in January sent me home with ibuprofen and paracetamol and wouldn't readmit me with what turned out to be an internal haemorrhage and I had to be admitted to A&E instead. Sadly it's not always the case that private is better.

  • Sorry to hear what happened. I am sure the consultant is competent whether dealing with me or NHS patients. The key is to find the right surgeon. I would see him under NHS just have to wait for several months longer.

    Hope you treatment goes well.

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