advice! From north west England!

[ejc4]

hello!!

Ever since my periods started I’ve been having absolutely excruciating pain. My family told me it was normal despite I was passing out during my periods, vomiting due to pain and struggling with I much. I suffer with pain during ovulation and there is only a handful of days when I don’t have period pain.

In 2022, I started the contraceptive pill but this did not stop the cramps I was feeling. I went to the GP in January for my health and was referred to lower GI for a colonoscopy. The consultant told me he is positive I suffer from endometriosis and asked my GP to start me on amitriptyline and refer me to gynaecology.

It took my GP until April to do the refferal and I am awaiting an appointment time. But I am really suffering.

I am from the north west in England! Ands I am a student In University. I think I need to go private because of this pain. My period pain is constant, there is a sharp pain in my right ovary from time to time mostly when I am ovulating . I am constantly dizzy and falling over, which causes me to turn bright red. I have a hot face and I am flush with cold hands and feet! The period pain is awful and I have had to stop so many activities because of it. Sex is painful. I fully believe I suffer with this but my GP aren’t supporting me or believe it affects my life. I am 19 years old and struggle with so much because of this chronic pain. Please I need some advice on going private and waiting lists!

[Amyrebecca246]

Is there another doctor at your GP practice you can see? On perhaps one based at your uni? It seems some doctors are set in their ways and seem to fob us off but if you get a doctor that listens and really emphasise your symptoms and how it's effecting your day to day life hopefully it will get the ball rolling again without having to go private.

[ejc4 in reply to Amyrebecca246]

Thank you so much for your help! I’ve tried but they really just Fob me off!!! I might have a look and see if there’s one who knows about gynaecology! Do you have any experiences with waiting lists?

[Amyrebecca246 in reply to ejc4]

From what I've seen on here waiting lists vary so much depend on where you are, which doctors are avaliable, how severe the Dr's deem your case, seasonal nhs pressures/strikes and a million other factors. I know they pushed my case forward after I ended up getting admitted to a&e with abdominal pain.

[ejc4 in reply to Amyrebecca246]

sorry to keep asking you so many questions!!! How was your experience with A&E? I’ve been once for high blood pressure but they just told me I was scared of doctors! Which I still suffer with to this day! There’s times when I have needed to go but haven’t and I am worried if I go in there with they’ll treat me as if I am being dramatic!

[Amyrebecca246 in reply to ejc4]

So a bit of background for context, I first got admitted to a&e end of Nov 2021 with severe abdominal pain that came on suddenly, doctors originally thought it could have been my appendix or pancreas and it wasn't until they operated they realised it was an ovarian cyst that twisted. Fast forward a year, get diagnosed with another cyst through scans (had issues with my periods and TTC) and again get severe abdominal pain. Go to a&e again and once they saw my history and I told them it felt like last time they admitted me for the night. Luckily my cyst had just moved and I was showing signs of infection. But after that they moved my surgery up and I got operated on within a month.

[ejc4 in reply to Amyrebecca246]

I’m so sorry to hear you went through that!! Did you find that they listened to you well? Or was it quite a challenge talking to them? I’ve been having a pain in my right ovary for some time now! But I’m not sure if it’s just ovulation pain? Even though it’s persistent throughout my period!

[Amyrebecca246 in reply to ejc4]

Luckily the doctors I've seen recently have been pretty good, however I know what it can be like as I've suffered severe migraines since my teens and the doctors always tried to fob me off then. Having a list of 'facts' about your symptoms help - eg. "I've had to take painkillers every day this week, I have missed 3 days of work/uni, the pain was that bad I was sick twice" and so on.

[ejc4 in reply to Amyrebecca246]

I will definitely do that!! Thank you so much!!!

[AMWV]

Hi, I’m also in the north west and based in Greater Manchester. I also had a difficult time getting GP’s to refer me and ended up having an initial private consultation which costed £250.  

As you say a referral has been made, contact the team the referral has been made to and ask about waiting times for your initial appointment. This may help you decide whether a private consultation is something you want to pursue as I know as a student this is a lot of money. You might find logging symptoms on the Endometriosis UK Pain and Symptom tracker for future appointments useful.

I notice you mention being a University student and thought there a couple of services that Universities usually offer which may be able to assist you such as counselling and disability support service. They can be really useful avenues of support.  You’ll likely have a student support team linked to your degree programme and contacting them and having a chat about your situation may also be really helpful as they may be able to offer support and advice for staying on track with your studies whilst managing being poorly.

[ejc4 in reply to AMWV]

thank you so much for your advice!!! I think an initial consultation is something I will need to do! Can I ask who you went with and what happened during the consultation?

[ocke2030]

hi,

you poor thing this endo is such a nightmare your symptoms sound very much like endo and the waiting is awrful can you be swen as an nhs.patient in a private hospital we have this thing in london called choose and book where nhs can be seen in a private hospital and not pay for it i hope you have something similar near you its worth finding out make sure its gynae with endo accreditaition good luck

[ejc4 in reply to ocke2030]

thank you so much!! I really appreciate your help! I was seen privately through the NHS for my colonoscopy but they just admitted me to a general

Hospital! There is a clinic near me especially for endometriosis but the doctor I spoke to about doing my referral that was asked by the consultant for my colonoscopy, did not believe I would benefit from that!

[purpleiPhone]

If you are in Manchester, I suggest presenting to Wythenshawe A&E when you are in pain, that’s how I got my diagnosis, they did investigations. They have an emergency Gynae unit. Can highly recommend the team there.

[ejc4 in reply to purpleiPhone]

thank you so much for your help and reply!! I think that is something I can consider! I live about half an hour/an hour away from Manchester would that matter if I went to that A&E?

[purpleiPhone in reply to ejc4]

No it shouldn’t matter, hope you get the support you need.

[laura98]

hello, I’m in the north west too - in Liverpool. I paid to go private with an endo specialist as the referral I had from my gp to general gynae was taking forever, it took 1 year and 5 months just to get the first consultation come through.

I paid 250 for a the private consult and he put me on his nhs list, I waited a year for a laparoscopy, and I’m now 5 weeks post op!

Sadly it feels like the north west has one of the longest wait lists! And I’ve heard it’s around 2 years for a lap. But you can try and call for cancellations xx

[ejc4 in reply to laura98]

thank you so much for your help!! Can I ask who you went privately? I feel that that is my option! If I pay for the initial consultation and maybe any scans would I go on the waiting list for the laparoscopy?

[MaggieSylvie]

Some period pain is normal. Not what you describe. As a student, presumably, you have very little money. Just keep pestering the doctors until you get help. You are not alone in this (not me - the pain was normal) as I have read so many posts from women in a similar situation. Tell them you cannot go on like this and make them listen. Only a small step, but you have to start somewhere. Be easy on yourself.😊

[Emmaja_ne]

I’m north west (wirral) I’ve been waiting since august for an appointment with gynae then god knows how long after that it will be until I get any more tests done. I finally found a GP who listened to my symptoms after years of being fobbed off. I now take ridgevidon pill back to back. I was sceptical at first but it has helped manage the pain, particularly because it’s stopped the ovulation pain. it’s a horrible waiting game. If you can afford to go private go for it.

[ejc4 in reply to Emmaja_ne]

I came off that pill!!! It was good for me from August 2022 until February 2023 and then it was back to feeling period pains! But I really hope it works for you and you get answers soon!!

[BloomingMarvellous]

Endo as the New York Times say” has a branding issue . It falls into the abyss of women’s diseases ( overlooked), diseases that don’t kill you (unimportant) and menstrual problems ( taboo). “

So before walking through the surgery door understanding that most GP’s in this country don’t even take what has been til now an additional course in women’s health helps (Mad) . Which means they might at best have a sketchy understanding of endo, if any at all. They aren’t necessarily equipped to deal with the problem you present with ( sigh). Armed with that be prepared to simply ask for the right referrals not solutions ( poor).

Whatever you choose to do to get a diagnosis presenting your “case” is often the key . Medics frequently look for the thing they can focus in on ie the primary issue they can solve today. Like most of us they like a quick good outcome. Endo of course doesn’t play ball with this particular diagnosis process instead appearing to be a chaotic bag of changing issues. Which seems to result in either panic on the medics part or diagnosing anxiety and dismissing with disinterest. None of which helps and the revolving door process starts off and the known big player of chaotic symptoms gastroenterology(gut problems) gets the referral ( not helped by endo having gut issues too). So using the symptom tracker on Endo UK site helps presenting it in an orderly way and gives thinking space for the GP. It also hands over a great big arrow to a solution. Make copies for yourself and leave one with them and letting them know you have kept a note of leaving them with them ( pleasantly but firmly). Let them know that you think it is endo and wish for a referral to the local endo team not just gynaecology ( as you don’t want to waste precious NHS resources and the waiting list is already hugely lengthy…)

Now controversially, because frankly it’s ridiculous to need to do this, BUT for your sake and to be heard sooner , worth trying as getting you well is priority … Take a bloke in with you. Preferably one with a hefty stare and prepared to be calmly firm saying it’s “ not okay for her xxx symptoms to be ignored anymore and we need to leave here today knowing the appropriate steps are now being taken. “ Honestly the burlier , the calmer, the more no sense they are the better. Be it a mate, boyfriend, Dad, Uncle, Grandpa it appears not to matter a jot. Drag some character off the gym bench and give them the right lines ( I jest but you’ll understand the lunacy of this bit) The difference in being seriously heard with rather than without is always when I have actually made progress in getting the correct treatment. I can say the same damn thing myself until I am blue in the face and I am good at self advocacy and presenting a case and be ignored and yet bring a man into the equation and suddenly the door opens. It’s not until ex rugby players and men of few words with great stares came into my life that I got anywhere… I tear my hair out with the stupidity of it all. We can argue all we like - quite rightly too - that it ought not to be this way but at the end of the day stuff the pain and all the rubbish that comes with it rent a rugby player …

[ejc4]

your advice is amazing! I have heard the whole “anxiety” rubbish from them and blaming it on gastrointestinal issues! I think it’s best I do bring a male with me to present my case again. I have been referred to general gynaecology despite asking for the endometriosis clinic!

[BloomingMarvellous in reply to ejc4]

Apparently endo produces additional cortisol all by itself too. So yup you’ve guessed it - we are more nervy, edgy and yes …ANXIOUS. It’s actually part of the symptoms 😂😂😂 but it ain’t necessarily US - it’s the disease 🦠.

[BloomingMarvellous]

For me it’s about changing the way they see what is presented to them not changing what is presented….

[Endowarrior1807]

hey

Are you based in Liverpool?

I’m based in Manchester and also had to see a specialist privately due to a mess up with my referral from the GP

[ILoveCheese2023 in reply to Endowarrior1807]

Hi yes I am but I’m willing to travel anywhere if it means getting seen quicker. Did seeing a private consultant speed up your treatment or did you have this done privately?

[Endowarrior1807 in reply to ILoveCheese2023]

My private consultant had referred me to the NHS BSGE which saved a lot of time as otherwise I’d have to wait for the GP referral to gynae.

I still saw the consultant privately but had access to the NHS BSGE support like the endometriosis nurse.

So in summary, whilst I’m still seeing the consultant privately, it did speed up the NHS process for me too

[ILoveCheese2023 in reply to Endowarrior1807]

best of luck to you going forward x