Confused... Endometriosis?

[EmmaT88]

So I'm not sure if anyone can help or not but I feel a bit lost so thought I would give this a go. Basically about 8 years ago I was having massive pains in my pelvis so they did a laparoscopy. They found a lot of pelvic adhesions and scar tissue they separated some of my organs and sent me on my way with no further investigation. Then about 5 years ago me and my husband started trying for a baby and after 2 years we had not got anywhere. They ended up finding scar tissue in both fallopian tubes with no hope of saving them so they have now been removed. We have gone on to have a successful round of ivf and have out amazing twin little girlies who are my life. So now they are 2 and my periods are unbearable I am on iron tablets as I loose so much blood that I am anemic as well as then being extremely painful. It's also painful when going to the loo when on my period. I have extremely painful ovulation pains. I get huge painful twinge if I move in the wrong position all through the month. I went to get a coil fitted to try and help my symptoms but after a very painful procedure they were unable to put it in saying that it seems scar tissue has moved my uterus to an awkward place. Now as I am still scaring inside I am thinking could this be edemetriosis that has never been diagnosed? Sorry for such a long post I am just unsure if where to go or what to do next ... thanks in advance! xx

[Hollibob]

Did they say the first op was scar tissue and adhesions from endo?

I would ask to be referred to a bsge endo specialist centre..

[EmmaT88 in reply to Hollibob]

No they gave no explanation and havnt never since then... So I have always wondered what the issue is and why my stomach has so much scar tissue. Ok Might ask the GP to refer me then I guess

[Hollibob in reply to EmmaT88]

You could also submit a request for Information under The Data Protection Act 1998 about your operation and findings from the consultant that carried it out. There will probably be a small charge, but you’d have it all for future discussions with the experts...this should include all notes and images

[Nicole9458 in reply to Hollibob]

It should be easier than doing am FOI and free. You have a legal right to your own records: nhs.uk/NHSEngland/thenhs/re...

[RicEndoUK]

Hi EmmaT88

It may be helpful for you to go to your doctor armed with information and its easy to forget in the heat of the moment, things you wanted say. You can find an interesting factsheet about getting diagnosed here:

endometriosis-uk.org/sites/...

Lots of people also find it it useful to keep a pain and symptoms diary. You can download one here:

endometriosis-uk.org/sites/...

I hope this helps and let us know how you get on!

RicEndoUK

Volunteer Moderator

[EmmaT88 in reply to RicEndoUK]

Thank you for this. I have my appointment in a couple of weeks and I will arm myself with all this information. Thank you! Really hoping i might actually have an answer after years of pain and issues... guess that's how everyone feels with something like this!

[Nicole9458]

I would also research and ask your doctor about Asherman Syndrome xx

[LadyPenelope]

If your periods are causing you such Hell, it can’t be normal. If you want a breather while you chase the NHS wild goose, you can stop your periods by opting to take contraceptive pills back to back; ie you don’t stop for a break to allow your body to release oestrogen and start the process again. If you’re in London, there’s an Endometriosis Clinic in Guys. If you want to chat with me, let me know and we can swap numbers. I’m the Duchess 👸 of Endometriosis.

[EmmaT88 in reply to LadyPenelope]

Thank you. The thing is all the pills I have had in the patmsr have disagreed with me, I get very angry and huge mood swings whole on them so not sure that could be an issue I live in Berkshire so not sure what specialist endo places there are near me but I will take a look. As iv said before I am just hoping to have a reason for all my issues... not sure why but it helps if it has a name for all the things that have gone wrong thanks for your advice x

[LadyPenelope]

I’m not sure what we can say here when it comes to medication. I’m 80% sure you have Endometriosis. I think I have one of the worst case scenario in the country. I can’t have anymore surgery because I won’t survive it. So in 2010 I was put in an artificial state of menopause using Zoladex. I’m yet to come across an Endo Warrior who has responded negatively to it. 😉

In case you haven’t already been informed, you can get educational material for GPs and also for yourself. Sometimes the good old fashioned printed information is a relief from the life of staring at a tablet all day. You can flip between pages and read until it makes sense. The tablet can be your dictionary. Nothing else. There are no pop ups on the pages to distract you 🧐. You can ask the GP Surgery Receptionist very sweetly if you can put some information her precious notice board which she personally vets anything that ends up on it eg the winter flu shot notice which is still proudly pinned on in the heat of July.

By the time you see your GP you’ll be an Endometriosis Specialist who speaks with confidence. Your GP will take you seriously and at least refer you to a Gynaecologist to investigate until you get a diagnosis and ...... more surgery. Sorry...... At least you’ll know what you’re fighting. Don’t forget to leave the information for GPs with your lovely GP. All the best!! My ears have been recently syringed to facilitate listening to gossip AKA feedback. 😁