After over 6 months of being on the waiting list I had my first gynecologist appointment today where I was met with a endo specialist who claims that I do not have endometrosis. His concern was my heavy periods and believed I should go on the coil or try for a baby. My concern is the pain that I suffer and how it debilitates my life. Contraceptives do not work for me. They cause me many serve side effects. After warning me over and over again of all the risks that keyhole surgery causes he finally added me to the 6 to 9 month waiting list.Has anyone ever just been dismissed like that about their endo? To not even have scans or tests done and he could just look at me and tell that I don't have endo. It makes it feel like its all in your head.
He made it seem like I am just some dramatic girl who can't handle a bit of pain.
He did no exam of me or tests. He didnt ask for my symptoms. He didnt even really listen to me. I assume many of you have been treated like this.
I just want to know I am not the only one and hear other peoples stories. Or how your operations went etc.
Thank you
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rfb1928
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I had my first appointment today after months of waiting. My doctor started me on mini pill 5 months ago to try and relieve pain and I have been struggling with side affects since (and no reduced pain!). The specialist just prescribed treatment for the side affects and advised IUD. Didn't ask any questions or any examination.
I asked if they thought it was Endo and they just said yes but said repeatedly they didn't want to do any further tests - I've had 2 negative ultrasounds.
I have had two internal scans so far and both were negative. The nurse told me each time that I don't have heavy periods and should either have a baby or the coil! It took me years for the doctors to actually agree my periods werent right and months for them to agree its endo. And everytime I go because of symptoms changing or new ones occurring they never prescribe me anything just say see how you go. All the pills give me really bad side effects. It got to the point that i tried to keep on it that i became so ill and they became worried i would have a seizure due to how i was. So i can understand how horrible it must be. Fingers crossed they help you more!
My first visit to the hospital here in Nigeria , they were suggesting surgery as the only option which kind of threw me off as they were not trying to explore other options before choosing to cut me open,
Then a colleague referred me to another gynaecologist in same hospital who listens to my rants and my pain levels and has turned to my friend over time which gave me some level of faith.
I just tried out the gonadotropin hormonal injection called Zoladex last week Tuesday.
My period started this Tuesday , it was hell on the first as I have ulcer too so it triggered the ulcer and I was having malaria symptoms, second day was much better, third day same, today is the fourth day , I’m not completely fine but I’m better than the first day
I am to explore this drug for a period of 6 months and if it doesn’t improve the whole thing then we opt for surgery.
Maybe consider flying to another country to see another good gynaecologist cos I’d be mad if anybody dismisses my pain like that
The pain I have causes me not to be able to stand on some days and other symptoms so it’s just tiring speaking to gynaecologists that are not passionate in times like this.
You’re absolutely not alone on this one, I’ve had many trips to the doctors ever since I was 12 for my debilitating periods. Every single time told it was ‘normal’ fast for to the last 2-3 years (I am now 28 years old). I finally got referred last year to a gynaecologist and even then after explaining all my symptoms that all pointed towards endo he also offered me the laparoscopy whilst making the comment ‘it’s unlikely to be endo it’s ibs’. Shock horror I had my laparoscopy back in July and had widespread endo! It’s awful that they make you feel like you’re going crazy! You really have to ignore there comments and keep pushing for what you need to get your answers! Wishing you all the best x
Same here I have been visiting the doctors about my periods since I was 11 or 12. Always being told it was normal. It was only last year when I discovered endometrosis that it started to make sense. It has took me since to be seen by a specialist and his words were "the operation will probably show nothing". Hopefully in a way when I do one day have surgery I will actually prove him wrong. At least then I have my answers and can try to get the correct help. I am 23 now. Wishing you the best also. Take care of yourself x
I can completely get where you’re coming from. I was told by my gynaecologist you definitely have all the symptoms of endometriosis but your MRI and Ultrasound show nothing. So I was tried on the mini pill and the normal pill nothing worked. I had my laparoscopy I was fearing the worse I would be told that would negative too. They did find endometriosis and adenomyosis. So I’m glad I went ahead.
Hope you get some answers soon and keep fighting for that op as hopefully like me they find something. Sending love and positive vibes. Feel free to reach out to me anytime x
Ask your doctor for a 2nd opinion from a Endo Specialist in Endo Clinic. Mine is in Hammersmith.That's not a exceptable approach or appointment and a totally waste of time. As for the coil few people find that is helpful for Endo it might make it worse. Was this man a Endo Specialist or just a Gynae of old school?
Unfortunately this seems to be the norm for endo but that doesn't change this being disgraceful. He cannot know for sure that you have endo or not just from chatting to you the only way to know fir sure is by having the lap. Its also concerning that he suggested hsving a baby this is sexist and is also a myth that it cures emdo suggesting that hes not a specialist at all! I would suggest asking for a transvaginal ultrasound as GPS can sometimes just refer you for one without it going through gynae. Mine showed a blood filled cyst which then helped me to be listened to. Good for you for pushing for the lap! You have a right to know what going on with your body and it's you that has to live with the symptoms not him so if you are saying that the pain is too much then it's too much. I wish you all the best 👍 xx
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