I didn't think it was possible to be more disappointed after an appointment than after my surgery but I was wrong...
I saw a private consultant today and he basically told me there is nothing wrong with me. That laparoscopies can never miss gynaecological conditions even when done by a general gynae.
He told me that he's referring me to the GAPP 2 trial? I'm really not feeling that. I don't think it will be of benefit, after all, I could be on sugar pills for 3 months!
He never examined me, internally or externally and basically just made me feel stupid for even seeing him.
Basically there's nothing more anyone can do. Taking my implant out will maybe stop my bleeding but my pain will be a mystery.
I feel absolutely hopeless.
I am 20 years old, I can't live like this any more😭😭😭
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staceymacg
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You can ask for a hard copy of your surgical report it may take time but it might be useful ask the secretary of your surgeon.
The pain clinic cannot find the problem passé they are there to manage your pain use a two prong attack to this managing your pain and finding ways to determine why.
Is there a support group in your area finding individuals in your region may be useful in determining professionals that can help
Do you have family to support you have you sisters or a mum who have experienced similar issues coping mechanisms are often passed on through families as we are similar genetically .
Please don't be so despondent you can find ways forward x
Some doctors aren't good with people unfortunately.
Are you on any form of pain relief? As already mentioned getting a referral to a pain clinic might help, they made changes to my medication and I had more good days than bad for the few months before my second operation.
Have you had a lap and if so was it someone experienced in endometriosis? My initial operation carried out by a general gynaecologist consultant said I had a few patches of endometriosis, roll on 8months and I was told by the specialist it's extensive and its taken years to get this bad and they had just missed it initially.
It might be worth you looking into the endo diet as it does help some people.
Endometriosis is a horrible disease but try to make the most of the times you've comfortable and keep trying things out to see if they help you. Zx
That's a long wait, but why not ask for the referral anyway and meanwhile keep trying other things. With endo there never seems to be a single answer. Just try to hang on and use us all for support. As we know, it takes most of us years to find a way to live with it, but we do.
I'm on gabapentin, prescribed by my GP. So that may be an option regardless of whether you enter a trial. It is said to work for nerve pain, i.e. Not cramps but sharp pains.
Stacey this is so unfair, I am so sorry you had this experience. He does not sound thorough at all. Get on every waiting list you can and see a pain specialist to at least ease the symptoms. Sadly I think so many of us have had disaster appointments which is awful but we can support each other. I know endometriosis is cruel but don't give up hope. Take care xxx
I am so sorry Stacey. I know how you feel, have been there myself. First of all, your doctor is wrong when he says laporoscopies cannot miss gynocoloegical conditions. After my first laporo, my surgeon said there was no endo. But i knew that the pain i was experiencing was not normal so i went to a different doctor, kept pushing and after a second laporo, i was diagnosed with stage 4 endo, adenomyosis, chocolate cysts on both ovaries, severe adhesions, fibroids, fused ovary to bowel, blocked tubes, retroverted uterus and other issues. I am from india so the system is completely different here but the doctors are competent enough so i have no effing clue how the first surgeon could miss so many different problems. But he did. i also remeber reading about other peoples experiences here where a lot of endo was missed during their first surgery. I am not saying that you have endo or something else, i am in no way qualified to make that diagnosis. All i am saying is that sometimes doctors do miss things so keep pushing until you have some answers. Get on all waiting lists, attend all your appointments and do everything you can to get referred to a bsge doctor.
Secondly, like many others have said, do go to a pain clinic. I know you think that they treat just symptoms and not cause, and that is true, but it can still be helpful in so many ways. First of all, if you are pain free, you will have lot more room in ur head to think about the way forward and you may be able to comeup with some new insights that you are currently missing due to pain. Secondly, the combination of medications you respond to (hopefully) can also give an idea about the root cause. To give a very simple example, if your pain does not respond to tylenol at all but responds quickly to advil, at least you know if is likely to be some inflammatory condition. You know what i mean?
Thirdly, i would suggest trying other things on the side to help yourself (if you havent done so already). Look up the endo diet (the book by dian mills has very comprehensive info on the subject), keep a food diary and see if anything relieves or worsens symptoms. Take up yoga and meditation (there are many free turorials specific to pain and even endo on youtube). Look into some supplements you can take. See if you can get accupuncture. It did not help me at all but i know many people who have benefitted greatly from it so it is worth a try. Get yourself a heat pad and a good tens machine. Get a full health checkup and see if you are suffering from any deficiencies. There are many such things you can do while you are waiting.
Finally, please remember that your well being is the focus and priority, and don't get too upset about not having answers right now. Sometimes in life we have to accept uncertain things. If you are able to get pain free, feel well within yourself and all your tests come out clean, then perhaps it is ok if you don't have all the answers. Please focus on your well being at the moment, and don't stress too much about other things. Good luck.
I'm really sad to hear that you've been fobbed off. It's a dreadful feeling.
I agree with you that the underlying cause of your pain needs to be diagnosed. It's not normal to be in pain.
Other posters have given great advice re. getting a copy of the lap. report and getting referred to an endometriosis specialist. A second lap by a specialist would be ideal.
Do you have a sympathetic G.P.? If you haven't already, please tell them how much it's affecting your quality of life. It helps to have a G.P. fighting your corner and writing the necessary letters.
I felt hopeless and helpless in the run up to diagnosis. I was getting misdiagnosed and fobbed off left, right and centre. I suspect many on here had that experience, too. There is light at the end of the tunnel if you can just keep going. You're not alone: we're here. You can PM me any time you need support. Big hugs, x
I just near enough had the same discussion today with a pain management consultant. He said the same about Endometriosis is always seen even by a general gyno. Even though i have a book about Endometriosis written by a surgeon who says it can be missed as it comes in various colours. I think they just have a old fashion view of it.
I would dismiss the ones who don't listen and find Endometriosis specialist that does. I wont be convinced i don't have Endometriosis until i have had a laparoscopy with Endometriosis specialist and he tells me i haven't .
I'm 20 and having the same problem as you. I got accused of having an eating disorder and that was causing my pain..I'm had to go to an eating disorder clinic where they told me I don't have one (witch I knew) and I'm still fighting with my gp to go see an gynae...I had my operation in December... and I'm still fight with them to this day... i know how you feel, it's the worst pain ever and so frustrating when no one is listening... don't give up..message me if you wanna talk/rant xxx
stage 4 endo can be missed by general gynae like it was in my case. despite an ultrasound showing a large endometrioma he still managed to miss it during my lap. fast forward i got a referral to a bsge centre and they did an mri which confirmed it was still there amongst other problems. 2nd lap confirmed stage 4!! he was gobsmacked as to how they could have missed it especially as its all over my bowel. general gynae are not thorough in checking all the necessary nooks and crannies that are needed. if u r continuing to have problems and theyve not actually done anything then the dr has a duty of care to send for other tests or a further referral. definately get a copy of your surgical notes from your gp.
Complain, noone deserves that. It's quite ridiculous you paid for a service you didn't receive. Trade descriptions and all that. Complain to hospital then their Secretary finally CAB. No person should receive payment for no service or poor performance!
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