So confused + fed up of Endo...

[LauraB_04]

Evening ladies x

Sorry if this is a bit of a rambly post, but I'm just so fed up with all this...

So I've had 3 laps + endo removed every time.... I currently have a Mirena in (fitted at my last lap in December 15) + also on Cerazette as I didn't stop bleeding properly.... so that's OK... but why oh why do my hormones still behave like 'normal'!? Throughout my cycle I get pain, mid-cycle I get pain + bleeding... and then at the end / start I get the same... no, the bleeding is nothing like it was before my laps / treatment, but HOW.....

My lovely Gynae is baffled with me... he isn't BSGE, but he has written a letter to get me into the Colchester centre (I'm getting married + moving in November, so the ball won't get rolling until then...) now besides being confused with Endo... is there any reason that my local GP down here couldn't get the ball rolling to start a referral to Colchester, or would it be better to just be patient and wait? I saw my current Gynae in August, so next appointment wouldn't be due until November (when I'll have moved!)...

Sorry for such a long rambly post... hugs + best wishes to you all xx

[Gweeda]

Hi, I'm not a doctor but I am a fellow endo sufferer. I had 25 years of pain and horrific bleeding before my diagnosis 3 weeks ago.

Although I was undiagnosed at the time, I was fitted with a mirena to try and help with my (unexplainable at the time) severe period pains and bleeding. This didn't help me. I ended up having to have it removed because the cramping was actually worse with the mirena in place. Then they had to tackle the fact that I was bleeding for most of the month with only a few days in between when I wasn't bleeding but had pmt. It was decided that having the womb out was the best option. I'm not sure if this would be an option for you or if you are young and still waiting to have children?

The best "endometriosis specialist" in my area carried out the partial hysterectomy a couple of years ago, and at that time I had bulging from my vagina which he said was a proplapse. Turns out that it's an endo mass which has continued to grow. He didn't see the "101 endo spots and cysts" whilst carrying out the op and completely missed the large mass. Due to this, I would say try and wait until you can be seen at a recognised endo Centre. If the best endo surgeon in my area could miss mine (stage IV severe endo) then I would say wait until you can be seen at a real specialist. Gynae people aren't bad people because they don't know, there just isn't enough training and recognition of the condition.

I'm glad you seem to have gotten a diagnosis earlier in your life but my advice is to ask your lovely local gynae to help you cope with symptoms until your move.

Sorry I can't be of more help than that and, of course, this is only my opinion. There is a FB group called 'endometropolis' which has specialist surgeons and sufferers worldwide on it. I have had lots of advice and support there so might be worth posting your question there too.

Hope you get some answers soon

Hugs xx

[LauraB_04 in reply to Gweeda]

Hello,

Thank you for your reply!

I am only 22, so having anything taken out (apart from endo! ;-)) isn't really an option for me... I had read up that this doesn't cure the problem anyway..? I really struggled with my 1st Coil which I had fitted at my 2nd Op, but this one seems to have gone down a lot better than that one...

It's never easy to know when is right to keep pestering the Gynae or whether to just keep quiet & try to struggle on...! I go to the Pain Clinic for a Steroid/Local Anaesthetic injection next month, but really not convinced they help.... I have Codeine, which works wonders, but the wretched side-effects make it just as bad as the original pains!!

I will keep patient! Hopefully the waiting list up there won't be too long once the referral is sorted... fingers crossed!!!

Thanks again - hope you have an easy day & speedy recovery! x

[Gweeda in reply to LauraB_04]

I'm waiting for an op to remove all endo and ovaries. Seems to be a lot of conflicting opinions whether this helps or not. The experts on endometropolis seem to all say removal of ovaries doesn't help but people have been in touch to say that they've had ovaries out and it's been great. I'm at the stage where I'll try anything!

There are a lot of younger women who have had treatment and gone on to have families with no problems. I hope this will include you. All info I've seen recommends only getting treatment at recognised centres. If your pain isn't manageable then get help for it meantime. There are many things that a good pain team can try to make the pain manageable for the short term.

Wishing you all the luck in the world and for a good recovery xx