Fed up with this and may never get an answer

[Bigbagofbloat]

I spoke to my gynae yest who ordered an mri scan in Dec. She said it showed ‘no evidence’ of mri and the laparoscopy I’m having soon may give me no answers. This is I’m getting to the point I can’t cope with the discomfort every month. Sever painful bloating. Really painful. Back pains. Leg pains. Struggling to poo. Usually a few days before I’m due on. Loads of excruciating pulling pain when I’m bleeding and lots of brown stringy blood. Also before I’m due on loads of discharge. Anyone have similar and what was it? I feel really despondent to think there may not be a cause when my gp thought it sounded like endo

Also is it worth having a lap if there’s no evidence of it being endo?

[lotusojo]

Hello, so sorry to hear about your situation. In my own experience, the doctors who implied they would find nothing wrong with me through laparoscopy were totally wrong and stage III endometriosis was found. Those kinds of comments did nothing but knock my confidence and make me feel like it was all in my head. I repeatedly hear of other women telling a similar story. Of course I couldn’t tell you whether to have surgery or not, but I do know that scans often do not show endo - doesn’t mean you don’t have it. I just had my first laparoscopy 2 weeks ago. If you can get to a specialist BSGE Centre I would advise that. As soon as I was in the care of a specialist, the tone of the conversation completely changed for the better. I hope you find answers and relief very soon...

[Bigbagofbloat in reply to lotusojo]

Thank you so much

[CharlotteMay01]

Hello, so sorry to hear that you are suffering, I completely understand and can relate that sometimes it feels as if you will never get an answer. Remember that there is no sure way to see endometriosis other than through a laparoscopy. From my personal experience I was told that even if endo isn’t seen explicitly in your laparoscopy it could still be microscopic and causing you severe symptoms. Of course I am not a doctor but this was what I was told prior to my laparoscopy so I hope this helps give you hope that you will find an answer! In terms of the MRI, I have diagnosed endo and it did not show up on a recent MRI, it can be disheartening but try to stay positive. Remember that this pain is not in your head and you’re not crazy, it sometimes feels like doctors are implying that you’re making it up and it can be really hurtful but don’t forget that it’s your body and you know it best. In terms of feeling like you can’t cope with the pain I would highly recommend having a look into TENS machines. I have found that it is the only thing that helps with my endometriosis pain. I hope this helps. All the best, hope that you find an answer soon.

[Bigbagofbloat in reply to CharlotteMay01]

Thank you so much

[rach890]

Heya, don't let what they say get you down, as a lot of the girls have already mentioned they can miss-diagnose even on a laparoscopy.

I had a load of scans that all came back clear, had my first lap by a general gyne who said and swore by the fact i didn't have endo just a PID, I thought at this point i was just going mental and it was all in my head but i had horrendous pain and a year and half later i finally had my second lap with a specialist where they discovered i had stage 3 endo.

You know your body and what feels right and wrong, keep pushing until you have an answer.

I found reading up as much as i could helped me understand my symptoms, nancy's nook facebook page is full of some great educational pieces or the book 'the doctor will see you now' was a great read, its written in simple terms by a specialist surgeon and provides case studies.

Good Luck x

[AsKal]

Hi there, I'm so sorry to hear you are suffering.. It is worth having the laparoscopy. With me I used to get extremely bad abdominal pain and they found a cyst in an ultrasound scan where my right ovary is and actually misdiagnosed me with pelvic inflammatory disease. The cyst I think haemorrhaged but I have been getting symptoms such as chronic pain around my ovary area and right upper leg, fatigue, mood swings, irregular and heavy periods. I had a laparascopy last week and they found a lot, things are stuck together because of endometriosis and there are cysts on both my ovaries so I will need a bigger operation. I honestly did not expect it to be that bad and I was surprised I had a cyst on my left ovary because the pain was dominant on my right side. This is why it is helpful to have a laparascopy, because with me they could see no physical evidence before that I had endometriosis, it was only a query. It was only confirmed due to laparoscopy. I hope you get help real soon! Take care.