Possible endrimetriosis

Hi I'm new to the forum just wanted to say Hi.

I went to the doctors 6 weeks ago with bad right hip pain and stabbing pains in my right pelvic area.

She sent me for an x Ray and some blood tests, all came back fine she said to come back to see her as she didn't think the hipmpain and the pelvic pain where related.

Went back earlier in agony with pelvic pain

She examined me externally and internally and said she wants me to have a scan, but she thinks its endrimetriosis.

I'm on my period now and I'm in pain so much pain I can walk properly or bend over with out sharp pains.

When I urinate it hurts a little too.

Yesterday when i walked I had pains shooting up my spine.

Can anyone help me ? Does this sound like endrimetriosis?

And ideas on how to relieve this pain

Hi.

I'm sorry that you are suffering so much. Your symptoms are very much like mine and I was diagnosed with endo through a laparoscopy op after being referred to hospital for hip and pelvic pain. All treatment will depend on your age. I'm 40 and have had my children and know im lucky so went for the full hysterectomy Inc ovaries but this is a drastic option. There are drugs you can take that stop estrogen so it doesn't grow which is normally done after op to clear as much as they can out. It is a horrible condition but you may not have it,other things like fibroid which can be removed can present the same symptoms too. I hope you get some answers. One thing I have learned from being on here is pushing drs to believe you seems to be a problem so the fact your Dr recognises it as a possibility is a good thing. Good luck

Thank you

I am 35 I have 2 children and don't intend on having more !

Fingers crossed they will hurry with the scan appointment

I can't even lay down the pain is so bad

Just be aware endo doesn't show up on scans always unless they have formed chocolate cysts. My scan showed large ovarian cyst but on op my womb ovaries bladder and bowl were fused with endo which wasn't seen! Hopefully you won't need to wait too long. Let us know how it goes or if you have any more questions 😊

Thank you

Hi i am 29 and been suffering with endo for the passed 10 years i have had 8 laproscopies i was told it would be very unlikely i would have children and ended up having a son. I have suffered in agony with the pain to the point where i have collapsed been admitted to hospital several occassions but because i have had to take strong painkillers for so long they now have little effect. The problem i have now is because i have had so many operations for it i have alot of adhensions and my bowel is stuck to my abdominal wall. I saw my gynaecogist yesterday who told me that the top of my womb is now squashed down with scar tissue and that will be increasing my pain the only option i am left with is a total hysterectomy however because of my age i would have to take HRT and it is proven taken over a long period of time drastically increases the risk of breast cancer. I really hope you are offered treatments and they work for you as no-one understands the pain and suffering of endrometriosis unless you have it yourself. I was given zoledex injections 1 injection every month for 6 months and that did relieve the symptoms for a while but not a permanent fix i really hope you get help with this

Hi. I decided pain free in my 40s is worth the risk of hrt which is actually less if replacing lost hormones rather than adding more at the natural age when they reduce but still produce. My consultant says as I'm on radar for check ups etc he'd be happy to prescribe into my 60s at a low dose as ovaries actually produce small hormones onto 80s. I hope you find a solution to controlling pain without more ops. Good luck

Hi

Well I went for an ultra sound on Friday I had to have an internal one also.

Yesterday (Monday) I got the results I have 1-2 cysts inside my right ovary and 6 smaller ones inside my left one.

They don't know about endrimetriosis

Cysts were all that showed up on my scan which turned out to be chocolate cysts due to endo. It wasn't until I had investigation op that it showed all this and that my ovaries were fused to my uterus and bowel. Not sure why this doesn't show but it doesn't. Will these results go to a consultant for you to have a further meeting to discuss?

Hi

The all info will be sent to gyne consultant

The docs called today have to go innforva blood test to check

My CA 125 level

Just waiting for my gyne appointment

OK update

Had blood tests on Thursday received results today

Ca125 level is raised to 57

Has anyone else experienced this

They also did crp and esr tests

The results from this was red blood cloth ?

Any ideas

Got consultant on wednesday

hi all 

 ok i had my gyne appointment on the 29th july, she has said surgery, she is not worried abou the raised ca125 level, but has said she wont know what we are dealing with regarding the cyst on my left ovary till we are in.

i have now recived the appointment and it is less than a month sice my appointment .

i am having a laparoscopy and a hystroscopy on the 27th august.

possible laser if their any endo.

i am a little worried with it being my first surgery ans all.

the only thing is on saturday 15th august i woke to terrible pains in my back and my stomach lasted for about 3 hours or so, it felt like contractions, although i know i am defo not pregnant, this is the only way i can describe this, has any one else experianced this leaving me with a feeling like i have a stitch in my side as if i had been running ( which i havent lol)

any advice please

Hi. It could be worry and your tense but endo and cysts causes those sorts of pains too. You're all booked in so best to get all sorted. I was worried about having my first op too but I promise it's like going to sleep and then waking up again. Yes it is sore but the worst part is first bit when they give you morphine which takes it away. Even after my hysterectomy I didn't need pain killers after first few days. Are you in on a day case? I will warn you you can wait hours as could be later on list so take magazines or something to occupy you. Good luck

Hi,

I had a D&C with hyperscope and lap on 8/13.I went to the GYN after having a period that last 15+ days with lots of clotting and an unbelievable heavy flow.  We knew I had a cyst on each ovary but there was no talk about endor.  It was only after surgery that the doc told my husband he removed it from my left side. Follow up is on the 27th and at that time we will discuss the possibility of controlling the endor with meds, which I'm on the fence about. 

I I will tell you I feel so much better after surgery than before. I didn't realize how much it was draining my energy. I was sore for the first few days. Now I'm tender and I don't have much energy but it's different and I can feel that once I recover it will be so much better. 

The worst part was contispation from the pain meds. Try and drink tons of water and take stool softeners. 

Hi

Yes I am in on a day case have to be their for 7.30am

So will take something to occupy my mind lol

Are your partners aloud to stay with you till u go down for the op ?

Hi,

When I was first called back to the prep area my husband was not allowed. Once I had my blood pressure, pregnancy test and was changed into a gown he was brought to me. He stayed with me until I was wheeled down to the operating room. 

I think it may depend as no one was allowed to stay with patients in my hospital at all. I was allocated a bed told to change into surgical gown,get my lovely stocking. Then surgeon and anaesthetist came to explain everything, do consent forms and give rough idea of where I was on list then it's just waiting my turn. Good luck

Hi all

Well had my surgery last Thursday 27th

My cysts had gone but she confirmed stage 4 endrimetriosis scaring fusing my uterus to my bowel together and a deposit on my bowel.

She didn't remove any off it, she said it was to dangerous in case it damaged my bowel

So have to try hormone treatment to help with pain.

I have had the meina coil put in but I am still getting bad period

Cramps.

Any advice

hi chaz , you sound like your going through hell hun, im at the moment trying to find out if i have endo as i believe i have it xx i wont bore you with all the details but i believe something is happening to my bowel and was wondering if you know if it can be showed up on a scan or whether u have to have laparscopic surgery to see this? feel im alone and fobbed off with it all xx hope u get better soon hun xx

Hi. I'm afraid true picture doesn't show on ultraound scan. More on an mri but true diagnosis via laparoscopy only. Nothing showed on my scan apart from cyst which I had lap for to wake up to say everything was fused hence the pain wasn't the cyst after all. Don't let them fob you off. If you happy to have laparoscopy of course.