Advice and thoughts

[NinaWiles]

Hey everyone. My name is Nina.

I just joined this forum, basically I am positive I have endometriosis although it's not been diagnosed. I am seeing a doctor on Friday to express my thoughts on this but just thought it would be a good idea to get some thoughts from anyone here too.

Let me explain what I've been experiencing:

I've always had painful periods but the severity of the pain varies every month, there have been months where I almost pass out with the pain, and I have to take pain relief almost always on the first and second day, otherwise if I'm at work I can't do my job without the pain relief.

Another symptom I get which first started back in 2010 is pain on having my bowels open particularly during my period but I also get a sharp pain opening vowels even when not on my period, the first time it happened (in2010) the pain was so sharp I couldn't sit down for a while, and it kept happening the following months (when it first happened I believe I had just stopped using the pill after being on it for I think 2years) nowadays the pain isn't as sharp on opening bowels but still happens for sure.

Lately another symptom I get a lot is period pain even when I'm not on my period, I have this period pain intermittently for 3 weeks (1 of those weeks is when I'm actually on) it's almost like the pain starts and I expect my period to come but nothing happens and this has been happening more often lately, I'd say for around the last 3 cycles.

I am worried it has always been endometriosis that's causing the above symptoms but perhaps it's getting worse, also I have got married recently and we are trying for a baby but I am aware endometriosis can cause infertility which is my biggest worry really, at the moment it's been 7 months trying but if there is something going on I'd rather know sooner rather than later so that perhaps something could be done about it.

But equally I am very scared of having surgery, but I am aware it's the only way to diagnose endometriosis unfortunately....

I have done a quiz today related to the symptoms I've been experiencing and it suggests I am at high risk of having endometriosis which makes me even more convinced, am I right in thinking this could be endometriosis?

Sorry for the long post, any thoughts are appreciated

[NinaWiles]

I forgot to say I also get really bad bloating, diarrhoea and constipation all at once especially during my period!

[LucyLoutoo]

Hi sorry to hear you are suffering. When you say seeing a doctor do you mean your GP or have you already had a referral? It does sound like something is going on and you obviously need some investigation and help. Whether it's endo or something else. Especially if you have been trying unsuccessfully for a baby. I would ask for a referral ASAP you may not get direct BSGE referral but try to get referral to a hospital that does have a BSGE specialist. It's worth doing your research from the start as unfortunately it is often the case that you have to push for the right treatment and care. You will probably have bloods done and various scans etc and ultimately a laparoscopy so that if it is endo you can have excision to improve your chance of conceiving. If you can get a referral moving asap hopefully things will move quickly for you. I wish you all the best x

[NinaWiles in reply to LucyLoutoo]

Hey thanks for replying, so I am going to see my GP first, and sorry to sound dumb but what does BSGE stand for?

I am aware that it's only been 7 months of trying but I know once it's a year they suggest to go see a gp about it as it's not normal not to have conceived within a year if we're both healthy. And it doesn't seem like a year is that far away so I am worried...

I will definitely tell the GP that this is what I'm suspecting so will definitely push for referral to the appropriate people.

Thanks again for your reply :))

[LucyLoutoo in reply to NinaWiles]

BSGE is British society for gynaecological endoscopy. If it is endo you will want one of these specialists to be able to do excision if necessary. You aren't at that stage yet and hopefully won't need it! But best to make yourself aware near the start of your journey so that you can push for what you need. Maybe research if there is a specialist at your local hospital and ask GP for choose and book service? Unfortunately GPs can't be experts in everything so it's worth looking up where you think you will get the best care for your needs. I really hope things are straightforward for you... and sending baby dust!! x

[NinaWiles in reply to LucyLoutoo]

Yea I actually work in the gynaecology clinics and know they would be the service I need to get the problem sorted if there is one, as I've seen them book patients in for laparoscopies etc.

Will see what happens, thanks for the info

[Lou7707]

Hi NinaWiles

To assist you with getting a diagnosis, here is some helpful information. There is also a pain and symptoms diary to download and fill in, to help you remember relevant information if you need it.

endometriosis-uk.org/visiti...

If you need to talk it through with someone we have a team of volunteers on our helpline who will be happy to help. endometriosis-uk.org/helpline

Good luck with the doctor.

Louise

Endometriosis UK

[NinaWiles in reply to Lou7707]

Thank you!!!