Feeling heartbroken after surgery any advice please?

[Lovebunnies123]

I came out my surgery this week it came back negative, I'm so distraught and angry after years of being in so much pain and having bad IBS symptoms, blood in my stool, being in pain constantly and having the most unbearable periods.My surgery was just with a general gyne surgeon who specialised in laparoscopy and pelvic pain, I feel like should have researched more before going for it to ensure she specialises in endometriosis.

After my surgery and being told by nurses "the good news" of them finding nothing and me then bursting into tears then I had to wait around an extra 3 hours to hear how my operation went from my surgeon (I understand there are other patients) I was told my reproductive organs are as "healthy as can be" I wasn't shown images or told what else could be wrong and why I'm in so much pain always, there are just so many unanswered questions... But I was told "it's probably where youre young and developing" (I'm 18, I understand this is young but my symptoms are getting worse all the time and I'm being told "they will most likely improve over time"

I then asked about my lumps that I have in my lower stomach which cause me a lot of pain, she had also felt them at a previous appointment and she said "what lumps" and proceeded to go get the doctor who was with her during surgery and he said he tried feeling for them (when my stomach was full of air!) And felt nothing... (no duh, I was full of gas!) I feel like they didn't even look, I explained to him what they're like and how there are lots he said they could be lymph nodes (which previous doctors told me without feeling them) I explained how they are always up and painful and usually lymph nodes are neither I also mentioned how you can feel them move when you run your finger over them, he looked at me and said yeah maybe go back to your GP.

So after all this and having a terrible time after surgery... I'm no closer to any answers, I feel like I'm letting people down because there's "nothing" wrong with me according to the "professionals" I feel like I'm faking it like I'm a phony and I'm doubting myself about everything... It's so lonely and heart breaking because no one else seems to understand how much it hurts me waking up and not knowing if there is even anything wrong or if it's all in my head.

[Lovebunnies123]

I know other women have similar experiences and to be honest I think that's the only small bit of hope I have left, knowing I'm not alone really, that you only feel alone in times like these... But reading all these stories brings me that bit of hope to keep fighting for my diagnosis. Wishing love and answers for all those who need it xx

[Channy3]

Hi sweetheart, I’m so so sorry ur suffering like this at such a young age! I know exactly how you feel, I’ve always had issues from a very young age… I’ve always known things weren’t right (u just know) over the years and after lots of research I’ve managed to actually diagnose myself with conditions based on my symptoms etc before the doctor did, it was like a breath of fresh air when what I thought was wrong was medically confirmed not because I wanted it, because I needed to know for my own sanity because like you I began to doubt myself. I’ve had many surgeries some have picked up on things others haven’t… I’ve been misdiagnosed a few times and now at the age of 40 they are finally starting to take it seriously! I’ve got a 9cm Endometrioma which I believe suggests I do in fact have endo, I’ll find out when I have it removed. Don’t give up, you know ur own body and only you can fight for it… endo is being more acknowledged now so I’m sure if you push forward and stay strong it won’t take you till my age to find out exactly what’s going on with you. Best of luck hun x

[Lovebunnies123 in reply to Channy3]

Thank you so much for your kind response, it means so much, it's so sad that so many women feel ignored and disregarded by the people that are supposed to help. Wishing you The Best of luck with the removal of your endometrioma and I'm hoping you have a fast recovery.

Thank you so very much! Xx

[curlyjo]

Hi there, Have you heard of adenomyosis? Your symptoms also match this because it causes painful periods, cramps, heavy periods and severe bloating. I was told I probably had it by my surgeon (along with other things they found during my laparoscopy) but she said it was difficult to spot because it is embedded in the muscle lining of your uterus. She was a top surgeon in our hospital here in Oxford so I'm wondering if your surgeon didn't have the expertise needed to diagnose what's going on. I can imagine you feel very upset and fobbed off by the medical team and I like many others here have to fight to be heard. Keep going and try other GPs and continue to do your research. This is a progressive disease and can cause infertility so it is important you get heard and treated now to stop it worsening. I would suggest stopping your periods as it can help stop the disease worsening. I had heavy periods from your age and had much more pain than normal plus IBS type symptoms but I was on the pill for many years. I didn't need treatment until my 40s so I wonder if the pill stalled its progression. I never tried to get pregnant so fertility wasn't an issue for me, but if you might want children in your future you might want to consider saying this in your conversations with your GPs. I hope and pray you'll find someone who will hear you and you get the treatment you need. Sending a big hug.

[Lovebunnies123 in reply to curlyjo]

Thank you so much for red and being so kind, Yes I have heard of adenomyosis, my lumps are in my lower pelvic region and are more easily felt when I tense my stomach so this could be, however, I am yet to find anyone else with physical lumps around and near their pelvis, but I will definitely look into this more.

My surgeon was just a general gynecologist, so I suppose it is possible that she may have missed something like this especially if she was just looking for Endometriosis.

I have been on the pill for 4 years now and my symptoms just come and go but often I always have some type of pain, the pain usually worsens at the end of my pill packet too.

I am sorry you have to fight to be heard its so sad that our pain is ignored so frequently, I hope you are listened to more now and have found peace with your diagnosis.

I really appreciate your kind words, Thank you so much xx

[Moon_maiden]

Hi

Sorry you are going through this, there has to be a reason for your pain, it's discovering what it is. I've heard other stories of women who have had endo missed as the gynae didn't know what they were doing. Request a copy of your hospital records, you should get everything including any photos from the operation.

I don't think we should but maybe if you can afford it at some point is to pay to see an endo specialist. In the meantime have you seen a gastroenterologist? If you are getting blood in stools you should have has a test to check on that.

What pain relief are you taking?

[Lovebunnies123 in reply to Moon_maiden]

Thank you for responding to my question. Yes sometimes I think it's all in my head, but then I get symptoms like swelling and bloating and I feel like something is wrong, I hope I can find out what it is.

It's so unfair that so many women have stories and bad experiences of being treated unfairly or not being believed.

Yes the only reason I got the laparoscopy is because we went private to a gynecologist and she sent a referral to my local GP. I am definitely going to look into any endometriosis specialists in my area.

The blood in my stool is not regular and happens sometimes, usually when my stomach is very painful or before breakthrough bleeding. I was told by the doctors that if it happens occasionally it isn't cause for concern unless it is along with other symptoms and a lot of bleeding.

I have been prescribed zapain as this is The only thing that takes the edge of my pain, I was also recently denied anymore as I was told I would get addicted because I'm only 18, luckily I spoke to a kind nurse who sorted this out for me.

Thank you so much for your time taken responding to my question I truly appreciate it xx

[Moon_maiden in reply to Lovebunnies123]

I’m sure you will find out what’s happening. It’s not in your head 🙂

The blood in the stool sounds like it is with other symptoms, honestly they just don’t think. Ask for a fit test (stool test) these days if you tell them what you want they’ll rarely deny it in case they miss something. Use one of the econsult forms rather than phone call, it’s in writing then.

When pain is real there is less likelihood of addiction, there is always a risk with anything strong. If you want non opiate or they refuse the zapain there is Nefopam to try. They don’t prescribe so much as it’s more expensive. If they do try to refuse remind them them that strong painkiller medication needs to be reduced slowly and under direction, not just stopped. Never just stop pain killers like that. Good for the nurse 🙂

Stay strong, it’s your body 🙂