This is my first time posting on here but I’ve been following for a while and have found it so useful to read all of your experiences!
I have had chronic pain for several years now and have been struggling a lot recently. All of my symptoms match that of endometriosis and I’ve been trying to get diagnosed for quite some time. I have had scans and swabs and was finally referred to a gynaecologist. After waiting 9 months for an appointment I eventually met with a gynaecologist who agreed that my pain could be endometriosis.
Today I had my second appointment which was to discuss a laparoscopy. I was feeling anxious but positive that I was finally getting somewhere. Unfortunately, it was not a good experience at all- my gynaecologist made me feel like I was wasting her time and like I was responsible for my ongoing pain. She didn’t explain anything about the procedure and said that ‘they barely ever find anything in a laparoscopy anyway’. I was so gutted and spent the whole appointment trying not to cry. She has put me on the waiting list for a laparoscopy but now I just feel so unsure and am second guessing everything.
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KerahGreen
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I had exactly the same experience at my second appointment. My doctor seemed annoyed that the mirena hadn't helped as he had expected it to and suggested that I give it another 6 months. I was visibly upset when describing how my pain and bleeding is affecting every aspect of my life and was offered no sympathy or even kindness. He put me on the waiting list for a diagnostic laparoscopy, but like with you, said that a lot of time they don't find a cause for pain during laparoscopy, and did everything he could to discourage me from having one. I have been second guessing myself ever since the appointment. We are doing the right thing by trying to find a cause for our pain. I recently spoke to a 111 doctor during a particularly bad flare up who encouraged me to pursue a diagnosis and that my symptoms definitely sounded like endometriosis, which was a bit of a comfort. I just want to know what is going on inside my body, I imagine you're the same? Sending love, you're not alone X
Girl! It's okay to feel this way once in a while but uk we gotta get our strengths back up and keep fighting. 🙃 I can relate to you i too just want to know what's happening in my body and that it's not because i m weak or i want sympathy.
Thank you so much for your reply! It’s so bitter sweet reading everybody’s experiences- it’s so awful that so many of us have had to go through this but it is nice not to feel alone. The community here is like no other❤️ I completely agree! The fear of not knowing what is happening to me is so scary; I am a huge over thinker and get myself so worked up thinking of what could be causing this pain and how that is going to effect the rest of my life. I so hope that we both get the answers that we are looking for but in the mean time at least we all have each other!
Thank you so much for sharing your experience with me ❤️
Hi KG, sorry you’ve had this unpleasant experience - I really wish it didn’t happen so often. It seems like docs who listen, understand and communicate well are few and far between! Please try not to be put off - you deserve the appropriate medical investigations and treatment for your condition. Remember that you don’t have to be treated by this gynae if you don’t want to, you could go back to your gp and request a new referral, to a different hospital if necessary. (Though I know that starting the whole process again is less than ideal…) You can research local gynae consultants online and check whether they have a special interest in endometriosis. The trouble is that endo is still a misunderstood disease that is a bit of mystery and can be difficult to diagnose and treat properly unless you know what you’re doing. I think it’s simply too intimidating for some of these docs, kind of beyond their capabilities! They also seem to dismiss you too easily if you suffer from anxiety or depression - I had a gynae do this exact thing to me. I was upfront about how my mental health had been, so he used this info to suggest that my symptoms were in my head, or that I was exaggerating. I was so desperate for answers, I nearly went back to him. So glad I didn’t!! It can be so hard to stand up for yourself & I wish I had started doing that much sooner in my life 😞 Sending love & virtual hugs xxx
Hello, just checked my mails and got to you. I hope you well both mentally and physically.
Whenever I think of mental illness i feel so shattered like it's just so hard for the people who go thru it and truly only they can understand that pain no one else can. And i totally agree with your post here. Feel free to dm me up if you feel like talking to someone. I wish you all the strength to cope up. Hope you never give up and find the right treatment. Stay strong girl! Xx
Hey! Thank you for much for your reply! It sounds like you’ve had a hard time and I am sorry for that! You are so brave for being able to be honest about your mental health - that takes a lot of guts! I’m sorry that your gynaecologist did not appreciate that 😕
Thank you for your advice; I’m so new to all of this, it is hard to know what avenues are available! I will go back to discuss with my GP. I have completely lost all trust with my gynaecologist so somehow starting all over again, doesn’t seem so bad!❤️
Hi there. Hope you get your faith back up super soon!
I can totally feel you.I've had numerous gynae who made me feel the same way over the years. I too tend to give up on finding answers and the right treatment but after some time the willingness to be okay gets me back up. I m still exploring and have not yet found someone who could understand my condition. You and i are gonna keep looking for it tho..fingers crossed.
It's okay to feel this way once in a while but no matter what the world says you always gotta believe in yourself and get back head on ^_^ If you believe there's something not right just don't let anyone tell you otherwise. I always wanted to connect with someone who could understand my pain and I can relate to you ig you feel the same way? 🙃
You are not alone. Keep searching for answers. You go girl! Positive vibes coming your way. Xx
Thank you for your reply! The community on here is incredible💕 You are right! I felt pure positivity coming from your reply- thank you! Sometimes it’s hard to keep focused when you get knocked back, especially when you’re so mentally and physically drained from being in pain- but you’re right! We all need to keep strong! And in the mean time, we all have each other ❤️
Glad you felt positive🌸 totally agreed! Never knew there was ever some place where there's no hatred just pure support. Please feel free to reach out anytime.🙃 Xo
Firstly, I’m sorry that you’ve been made to feel this way. I sympathise and completely understand your situation as I have had to fight hard for my diagnosis.
I have been fobbed off with contraception, painkillers and medication for nerve pain to no avail. I finally had a laparoscopy two weeks ago after being told I just had IBS and constipation…. They found and removed endometriosis from my bladder but the surgeon didn’t have the specialist experience to remove dense bands of adhesions connecting my bowel to my abdominal wall. I’m back to square one and waiting on another referral. The surgeon didn’t refer me further as she decided the best option is to leave it!!!! I’m in a lot of pain, it’s now daily so my battle continues but please, do NOT give up this fight. You know your body better than anyone else. Don’t be disheartened if they find nothing, get a second opinion!
Thank you for much for your reply! It sounds as though you’ve had to deal with your fair share of awful professionals. I am in a similar position- my gynaecologist has said that it may be IBS and wants me to take medication for that in the mean time to see if it stops the pain I am in. She prescribed me but didn’t actually explain anything about the meds, or when I should take them. It’s all just so confusing! I’m heading to the local pharmacy today to see if they can explain it all to me.
Thank you so much for sharing your experience with me- I hate that so many of us have to go through this but it is nice to not feel so alone anymore! I hope that we both get the answers and treatment that we deserve! Thank you for sending so much strength in your reply ❤️
This sounds odd as I am to have a 9cm cyst and both ovaries removed during a lap surgery (3 incisions) hope you soon have the answers you need. I was given external and internal scans on my first consultation visit cannot fault the attention and respect I was given. p.s. I am 74 years of age
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Do I have surgery again? Sorry long post just feel so deflated. Advice needed
Feeling lost after negative laparoscopy 
Feeling low and alone.
No endo found - feel so frustrated 
Don't know how to feel 
