EmaW3 years ago

She doesn’t sound like a very nice gynae...at least your GP is on your side. Would it be too late to ask your GP for a referral to a different gynaecologist for the laparoscopy and follow ups?

Don’t feel stupid. Some times you have to push for them to listen. If the laparoscopy comes back clear at least you’ve tried something to diagnose the pain rather than mask it.

My first GP kept dismissing endo when i suggested it. When i finally got referred to a gynae she was awful. She was a trainee and just didn’t know what to do or say. It was so awkward I went home so upset and put off.

2 years later after ‘dealing with it’, I changed GPs, she suggested endo and referred me to an amazing gynae who booked me in for a laparoscopy straight away. He diagnosed stage 3/4 endo and said I could require further surgery.

I’ve since done the rounds fighting with different doctors and referrals to the IVF clinic just to find my way back to him a year later and he’s booking me in for my 2nd lot of surgery for the rest of my endo and a hydrosalpinx.

It shouldn’t be this tough to get answers but if there’s one thing I’ve learnt is that you have to listen to your body and it’s alright to be stubborn and pushy some times I hope the laparoscopy goes well and you finally get some answers. I find that waiting is *sometimes* just as hard as the pain.

Chloelouise92 in reply to EmaW3 years ago

It’s so difficult isn’t it just feel like sometimes they don’t want to listen and don’t want to help! I’m going to go back to my gp anyway because I’m scared if I don’t have an Endo specialist that they will say it’s not that etc and I’ll be back to square one trying to fight to find out what’s wrong with me! X

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EmaW in reply to Chloelouise923 years ago

It shouldn’t be this difficult, but from being on here it sounds like so many people go through the same struggle.

Definitely make sure your surgeon has endo experience and you’re happy with them. It’s stressful enough going through the surgery without having to worry about what comes next. Hope it all works out for you and you get a diagnosis!

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Chloelouise92 in reply to EmaW3 years ago

Thank you so much really appreciate people taking the time out to reply! Makes me feel abit more human haha and I’m not going mad! X

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Bubblepoppy3 years ago

I must have had 3 gynes that did that to me I don't know how they can call themselves sympathetic sometimes, I could have slapped mine all of them until I saw my 4th and this time I took a diary of every symptom I have told her about the daily pain and made her read through it all before I spoke again I was so expecting to hear oh let's see how another tablet goes or try the marina coil again oh she did say that but I was adamant saying no way, then at the end said I'll send you for a laperoscopy and ablation for my adenomyosis too, finally a result, she also had to give me the pill back to back I'm sure they get commission every time they give a pill out 😂 which hasn't worked for me now I've been waiting since 20th May for this laperoscopy and ablation and there's still no sign of it coming I'm at the end of my tether sorry for the long post hope your pains ok today xx

Chloelouise92 in reply to Bubblepoppy3 years ago

Seems crazy to say it but it’s a relief hearing somebody else say the same! I’m just in pain all the time and I get no let up from it at All nothing works and I’m just soooo fed up now! Hope you’re okay x

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Bubblepoppy in reply to Chloelouise923 years ago

I'm the same sick of moaning all the time I piss myself off sometimes now 😂 sick of all the daily pain and I'm constantly rattling from all the painkillers I'm on too so your not alone either I bet most of the women on here have been in the same boat at some point hope you get a appointment sooner rather than later and I hope it's not as long as mine is taking xx

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Chloelouise92 in reply to Bubblepoppy3 years ago

It’s ridiculous isn’t it! Feel like they just palm you off with tablets and hope for you to never come back! Hope you get sorted too! At least we can moan on here to each other and people understand it! X

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Pureunicorn in reply to Bubblepoppy3 years ago

Hi just reading everyone's stories, I've been diagnosed with stage 4, now waiting again to see an endo specialist, my advice nag nag nag!! Be a pain and keep phoning asking if ur appointment has been made or when can u expect to hear from them, my first hospital forgot to make the referral to the specialist hospital so I found the phone numbers and phoned them and made a fuss, it worked yo some extent, just dont sit bk and take their word for what they are doing ask and request letters they are sending so u know they are doing what they say 😊👍 good luck x

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Chloelouise92 in reply to Pureunicorn3 years ago

Thank you, I’ve had a horrendous weekend, been in agony, nothing helps the pain and I haven’t even got a diagnosis yet. I’m pretty sure it is Endo but when you have gynaes sit there and tell you they’ve done an internal and nothing’s wrong it starts to make you feel like maybe I am just being dramatic! But it’s not normal to live with pain every day and nobody deserves to be palmed off. Thank you...I’ve learnt you have to fight for yourself now as nobody else will! X

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Pureunicorn in reply to Chloelouise923 years ago

Yes u do but dont give up, I suffered for 3yrs even telling my doctor I showed most of the symptoms but they just sent me for ultrasounds! Then a cyst showed up on one and that's where I started to get believed! But even after being diagnosed it's still not been an easy time and others who dont have it sont always understand how debilitating this can be, just remember ur not alone and stay strong and try and take someone with u to appointment, good luck xx

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Chloelouise92 in reply to Pureunicorn3 years ago

It’s crazy isn’t it!! I can’t believe how many women suffer with this horrible Illness yet it’s still not taken seriously by so many medical professionals. I hope I can get some answers soon as me and my partner want to start trying for a family soon. I will always take my mum to appointments with me now, especially since that last appointment!! Thank you x

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StefaniaJW3 years ago

No one can help you with endometriosis. Gyns, GPs are all taught to give drugs and perform superficial sugeries in med school. The vast majority of them lack the knowledge and skills, but it's not their fault.

An experienced endometriosis excision surgeon working with a team is the only surgeon who will be able to help you. You need all endometriosis excised in one sitting if you want any chances of having a family in the future. Who is going to perform the laparoscopy in three months? If it's not a highly skilled and experienced BSGE-certified surgeon or a Nancy Nook surgeon, the chances the surgery will be quite ineffective as extremely high. I highly encourage you to research the surgeon, his team and the centr you'll have surgery at.

Your future depends on this surgery. Make sure someone skilled will perform it.

I am here if you need names or guidance

Chloelouise92 in reply to StefaniaJW3 years ago

Thanks for your advice, at the moment I don’t feel particularly hopeful as the gynaecologist consultant I saw was so dismissive of my symptoms that I think she just thinks I’m being dramatic. But it’s okay for them isn’t it they’re not the ones who have to live with it! I don’t even have a diagnosis yet that’s just the start of it.

She hasn’t given me any information at all. She didn’t even tell me what the procedure is literally just tried to put me off having it done by telling me all about the risks. She had no intention of telling me how long roughly I would have to wait for the surgery...my mum had to ask her.

I understand the nhs are majorly busy but nobody chooses to be ill or want to have surgery!!

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StefaniaJW in reply to Chloelouise923 years ago

Gynaecologists, GPs and many other physicians are not taught how to treat endometriosis effectively in med school. It's not their fault, they are just not knowleadgeable on the subject and won't be able to help. Only well-versed, both well-trained and experienced EXCISION surgeons (not ablation surgeons) will be able to provide a diagnosis AND remove all endometriosis in one go. That's what you need. PM me if you want names of truly capable physicians who will be able to help you, who will be able to talk to you with empathy and actually allow you to live a pain-free life after surgery (at least for a few years)

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Pureunicorn3 years ago

Hi just reading everyone's stories, I've been diagnosed with stage 4, now waiting again to see an endo specialist, my advice nag nag nag!! Be a pain and keep phoning asking if ur appointment has been made or when can u expect to hear from them, my first hospital forgot to make the referral to the specialist hospital so I found the phone numbers and phoned them and made a fuss, it worked yo some extent, just dont sit bk and take their word for what they are doing ask and request letters they are sending so u know they are doing what they say 😊👍 good luck x

Purplewitch183 years ago

Im sorry you are going through this and your gynae is so rubbish! Your mom did the right thing. I had to demand a laparoscopy too as they were never going to offer me one in all the years of going back and forth. I finally had it nearly a year ago, they found mild endo and other issues they would never have found without the lap. Though they said mine was mild, that just means it was in one place. Mine makes me really ill and has been excruciating pain since i started my period at age 11. You will get some answers now, and can decide what to do from there. Best of luck to you x

Chloelouise92 in reply to Purplewitch183 years ago

I can understand why people take such a long time to get a diagnosis after my appointment! I’m so glad I wasn’t on my own! It’s mad to think you have to almost self diagnose and tell them this is what I need. So many women suffer with this and you shouldn’t have to fight to get answers. Thank you for your reply x

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Purplewitch18 in reply to Chloelouise923 years ago

I know it makes us all very angry and fraustrated. I see it as my own health is in my hands to a point, drs may provide treatment but its up to us to get to that point a lot of the time. Youve done well to get this far, and stay on this forum, theres a lot of support and understanding on here, and someone will always answer if you need help or advice x

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Ollie32753 years ago

I know how you feel!

I’ve had pains and all the symptoms for just over 2 years, I was passed round every speciality before finally getting to a gynaecologist. The first gynaecologist, like you I wasn’t even in the room 5 mins and she told me there was nothing wrong goodbye!

So I got myself referred to another gynaecologist, who seemed amazing and agreed yes it sounded like I have endometriosis but recommended that I had my implant taken out to see what would happen....well my god that was the one thing I could have done!

So I went back to her and she reinserted it but is now saying oh well you’re young surgery could affect you having children in a few years....as could it being left untreated? Maybe I should just try other contraception and pain killers to mask the pain!

So the end of that appointment and a lot of tears and strong words from me she referred me to a pain specialist who is supposedly the best in the business and if she reckons I need surgery well then that will be that!

But until I can see the pain specialist I continue on codydramol which may aswell be a tic tac!

Completely understanding your frustration!

Chloelouise923 years ago

I don’t understand how gynaecologists can be so dismissive of women when endometriosis is so common and how many women do you need to tell you how debilitating it is before you actually take it seriously! I’m now so nervous that if they don’t find any during a laparoscopy I’ll just be shoved on more tablets with no diagnosis. A lot of women have said on here that they had several laparoscopies and ‘nothing was found’ before an Endo specialist done the exact same procedure and found lots of it! I don’t understand how this can happen when is so common!

I hope you get some answers soon!! X