Advise on symptoms

[Charcatlady]

Hello I’m new to this group but I’m very glad to have found you! I’m almost 40 and since I had my son aged 33 my periods have been terrible, over the years I have sought out help as now I have pain maybe 3 weeks out of 4 , this last year I have really pushed for a gynaecologist appoint which I have finally got in around 10 weeks! My questions are to ladies who have confirmed endo is, do you feel crippling tiredness extreme lower back pain, feels like you’ve been kicked and battered! Headaches , bloating , pain when going to the loo! Both types! And just extremely delicate on the tummy? I seem to have less and less good time in between periods now! Is this all symptomatic of the condition? I feel really rough a lot of the time even when I’m not on period 😒

[emmab178]

All seems to fit. Congrats on getting a referral. There's a great fb group with advice on what questions to ask etc in each appointment. Will message you. Lots more support in that forum

[Charcatlady in reply to emmab178]

Oh Thankyou so so much for replying to me!who do I look up on fb? I think I just wanted to reach out and ask others experiences as this seems to be taking over so much of my life even when I’m not on my period and it’s beginning to scare me a bit how debilitating it is x

[emmab178 in reply to Charcatlady]

Endo is pure evil. Apparently I've got stage 4. They want to do a full pelvic clearance and then i need a stoma as its all around the rectum. Only took 25 years to be diagnosed!

Messaged you the group name. I've found alot of Drs speak rubbish about endo. Best to be informed from that group. Can't put it in chat as they don't like it on here. You can name Drs in the fb group and get feedback

[Charcatlady in reply to emmab178]

Just seen this part of your message, good god you poor love! Wishing you luck with your surgery and a speedy recovery! I’m so grateful to you for coming back to me x

[emmab178 in reply to Charcatlady]

Not yet decided to go for the surgery. Want to see how my symptoms progress and possibly have another ivf round.

I messaged you the fb group, lots of info on there x

[Charcatlady in reply to emmab178]

Lots of luck on your journey x

[Charcatlady]

Thankyou so so much this is extremely helpful xx

[Orla1234xx]

Exactly how I’m feeling! Everyone’s symptoms are different but they seem like the telltale ones!

[Joeyjay]

I have stage 4 - now 47. Can relate to what you are saying and really sympathise. The toilet situation has caused me real problems over the years and the pain that comes usually on a morning has you close to or actually passing out. It’s a very disruptive disease and very interfering in your daily life. I would suspect you do have endo from what you are saying. It takes an eternity to get diagnosis or at least seems like it! I have prostap injections and take Provera three times a day and have got some quality of life back although I still have flare ups it’s not on a daily basis or for periods of 7 hours. A swapped to a meat free diet also and found this helped although I really miss it! Stay positive and don’t let it get the better of you xx

[Charcatlady in reply to Joeyjay]

Thankyou for advise, I’m really quite clueless as to what the treatment is ? What are those medications you mentioned? It’s helpful to be informed for when I see my consultant! I don’t cope very well with hormones ( contraception pill ) coil etc makes me a bit loopy!!

[Joeyjay]

I had many surgeries removing cysts then new cysts it spreads like poison ivy. The consultant will more than likely want to to external and internal scans first - if that shows anything they will probably do an exploratory laparoscopy which will reveal the extent of it and where it is. They can do a hysterectomy if you have finished having your family - that is dependent on it not having spread to your bowel. What has worked the best for me was the prostap injections and now am permanently on Provera as the pain came back after the prostap injections wore off so had to have more injections then as it was coming up to the end of the time they put me on Provera and life is better. The best advice I can give you is prepare yourself mentally and don’t let it own you there will be some really bad days when you wonder how you will do another day with the level of pain - you can do this . You can always message me if you need an ear. Take care xx

[Joeyjay]

In addition to my reply the medications I mentioned put you in a false menopause but I would definitely opt for that over the pain any day!!

[Charcatlady]

Ok thankyou for all the advise! God there is so much to think about, didn’t even know it was possible to p you in false menapause! I feel very ignorant! The information is very helpful from you all x

[StefaniaJW]

Yes, you need to see a specialist because it might be endometriosis. Please only get an appointment with an extremely skilled excision surgeon who works as an endometriosis gynaecologist and not just any regular gynaecologist because endometriosis treatment and surgery is not taught during gynaecological residency. Please PM me if you need names of extremely skilled excision surgeons working within the NHS.

[Charcatlady in reply to StefaniaJW]

Thankyou very much I’m based in West Sussex, hoping I get to see someone on your list!

[StefaniaJW in reply to Charcatlady]

I'll PM you