Waiting time for laproscopy...please help. - Endometriosis UK

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Waiting time for laproscopy...please help.

Tippi2 profile image
10 Replies

Hi,I'm new on here and seeking support. I have been referred to my local hospital for a laproscopy to check for endometriosis as well as blockages after experiencing changes to my periods, which started almost 2 years ago.

To give context, my periods were fine up until 2021. I then started to experience extreme cramping that would have me crying in pain, severe nausea, migraines and bloating. I have struggled to get pregnant for over a year. I notified my Dr's time and time again but they only took me seriously after I mentioned my family history and that a close relative has endometriosis and mentioned that my symptoms sound very similar. The pain is so bad some periods that I struggle to focus and normal painkillers don't do anything. I now dread my period each month whereas before I took it in my stride.

Anyway, after my Dr told me about referring on i received an email letter that allowed me to book an appointment with gynaecology. When I went to book I was horrified when the next available appointments came up for Sept 2023.

I looked online and NHS states 18 week wait. This is well over 4 and a bit months.

I dont want to seem dramatic but I'm in so much pain. I dread my periods and as I type I have been sobbing because of the severe cramps and nausea I'm experiencing. I am extremely worried about the wait. I have no indication as to whether this is surgery, but assume not as I'd need a pre-op. So basically concluded that I'm expected to wait in pain to have a consultation before we even get started on investigations.

I am really concerned and stressed about the wait. If I do have it, waiting leaves it unchecked which could do so much damage. I've cried so much because I can't afford to go private and if if do have endo I'd want to know sooner than later. I want children but I want to have options and get to the bottom of why I'm getting so ill.

Has anyone else experienced similar. Any suggestions at all? I am tired of being in pain that stops me from going about my normal business.

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10 Replies
Emmaja_ne profile image
Emmaja_ne

hi, I was referred last august and still waiting for an appointment and this is just for the first initial review with the gynaecologist :( I completely understand your frustration. Would you hold off trying for a baby until you have been reviewed? I’ve ended up going back on the pill taking it back to back to stop my periods which has helped alot I must say.

Tippi2 profile image
Tippi2 in reply to Emmaja_ne

I am so sorry. I feel a buy guilty for whingeing about it now as other people have waited far longer. I dont want to hold of trying due to my age but also I have issues with contraception. Unfortunately none agree with me, I have tried every option over the years and get the same issue. It basically inflames/aggrevates another condition i have. When I last saw my Dr they agreed that my options were exhausted, apart from trying menstrual trackers or the coil.

Emmaja_ne profile image
Emmaja_ne in reply to Tippi2

it took me around a year to get pregnant so I completely understand. I ended up using the ovulation sticks and they worked well. (Some months I didn’t ovulate!) I must say the symptoms were non existent when I was pregnant, the best 9 months ever haha. They all came back 100x worse once I’d have the baby though :( x

Unfortunately my hospital is exactly the same, says 18 weeks on the website but it’s more like 48 :-(

Tippi2 profile image
Tippi2 in reply to anonymousunicorn

Thats horrendous :( I am sorry that you've been waiting so long. It really angers me that women are being left to suffer and risk issues with their fertility due to the length of time it takes. It's just not acceptable. My biggest fear is that my ability to have children will be compromised. We all know waiting and waiting without intervention isn't good with endo!

anonymousunicorn profile image
anonymousunicorn in reply to Tippi2

100%, it’s awful that there are so many women in the same situation and still no action or even acknowledgement that there is a problem with the system. Stay strong and take each day at a time, sorry I can’t offer much more advice but I do know how isolating this can be so remember you aren’t alone 💗

yogibean profile image
yogibean

My heart really goes out to you, so sorry to hear your story.

Firstly, I hope you find some comfort in the support of this group and know that you aren't alone.

My local NHS gynae department was so over-prescribed they had to close it to new patients, currently looking at 2 year waiting list for first appointment. I was then told average 9 months wait for the laparoscopy operation. Its taken 8 month since my first appointment and i finally have my laparoscopy next week. It really seems a post code lottery on how quick you can get seen.

I have heard that taking the pill and mirena can really help some people but of course if you are trying to conceive may seem counter productive at this point. I too have tried taking the pill but it produced so many other side effects that it made everything worse. But remember every 'body 'is different and if you are in so much pain it maybe worth trying?

Have you also tried looking at diet and lifestyle or more natural methods for managing the pain? E.g. Taking Tumeric tablets to ease inflammation? Cutting dairy / wheat / meat was recommended by my gynae specialist too. Caffeine and alcohol can also be triggers. I recently purchased the book "Endometriosis: A Key to Healing And Fertility Through Nutrition" and there is lots of helpful and hopeful case studies in there.

I would be persistent with your local GP to see if there is anyway they can speed things up or even get a NHS private appointment? They could also prescribe some stronger pain relief in the meantime.

Tippi2 profile image
Tippi2 in reply to yogibean

Thank you for your response. Yes it is really disturbing to find out how long the waits are and how it doesn't seem to be taken seriously. I know some hospitals have outsourced to private hospitals and offer weekend and evening appointments to deal with the backlog. I have lots of other health problems and other departments have done this, which has been a relief.

I am not willing to go back onto any contraception as it really does cause me severe problems. It's not side effects, for some reason it flares another illness I have.

I already take turmeric for other conditions and vitamins. I have cut down on dairy as noticed this somewhat affected by IBS. Also another family member said it helped with their endo. I am quite a conscious person and ok to make lifestyle changes. I also excercise regularly. In a way it makes things harder as i am already proactive, mainly because I have to be due to my other chronic conditions. It just makes me feel more at a loss when trying to manage this issue.

I do not know for sure if it is endo. I really hope it isn't for obvious reasons. I will call the hospital as there's no clarification as to what this appointment is. I have been prescribed some stronger painkillers for cramps which is good. It's the mental toll though isn't it? The pain can be masked somewhat but it's the fact that if it is endo it's not even being investigated or treated for long periods of time. It doesn't stop the anguish that we all face. If I had the money I would 100% go private.

I am glad you are getting your laproscopy. I hope it goes well and they're able to help you 🙂

AlexaMac profile image
AlexaMac

hi have read about your pre op not being set up, our hospital states no more than 6 weeks between pre op and procedure, so you may still get this. My gynea pre op was 4 weeks before my laparoscopy and also hysteroscopy to take endo sample hope this helps. Good luck, have you been told to keep a diary of your symptoms and cycle, this helped my surgeon really well. Remember please they are only human like us and if they have it down in black and white it does seem to help.

Stay strong and hope you soon get the result you are hoping for.

Jll374 profile image
Jll374

I have been struggling since I was 16 (5 years) with irregular & heavy periods, as well as severe pain stopping me from doing day to day things. The doctors have never took me seriously and fobbed me off on numerous occasions and I am only just getting any help with this. I’ve had all scans done and they haven’t found anything, but in the recent months my pain has got so bad and I’m struggling. Im getting awful pains in my lower back and a full pain in my lower left abdomen that never seems to shift, this gets a lot worse when I’m on my period. I’m still struggling to get through to a gynaecologist to be seen, and have had no luck so far.

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