Right side pain 3 years

[Marie444]

Hi all I'm new to this I have been having right side pain under my rib and pelvis going into my leg, back and right side shoulder pain that comes and goes and often is so bad I feel I could faint. firstly they thought it was my gallbladder a ct scan found adeniomyomatosis of the gall bladder which has no symptoms they wanted to take it out but I had reservations meanwhile I started to notice that I would get this terrible pain around the time of the month, sometimes I would have vomiting also, I have a hernia and mild reflux, everytime I ended in a &e they gave me a different answer, my stomach, kidney stone and nowendometreosis, I get many kidney infections sometimes I go and I have one others it's just the pain and no infection and blood in the urine, I noticed the pain is often around the time of the month, i have had ultrasound of pelvis gallbladder and kidney all clear.I have been brushed off and be littled my doctors I'm waiting to see a specialist but could take months I'm tired and exhausted and don't know what to do. Has anyone else experienced this could it be endo? 😞

[SuzanneT]

Have you had an exploratory lap done to see how bad the Endo is? My Endo is extensive and is also on my bladder and ureter. Endo on these areas can not be removed safely so you will have to look into other medical waysto treat it. You will experience blood in your urine and kidney stone/UTI type symptoms. I kept having UTI's with pain and difficulty with urination, and that's why. Scar tissue and adhesions can also form causing your insides to stick together. My SI joint was covered as well and causing the back pain/leg numbness.

[Marie444]

Thanks so much for your reply I'm waiting to see the specialist I have had a tv ultrasound but noting showed upI'm waiting to see a specialist but Iv been waiting 6 months, I had never thought endometriosis until they mentioned it in the hospital. I know my aunt had it. I just wanted to see had anyone else experienced this. I'm at the point now where I just wish I knew what it was, it is getting me very down because I have been dismissed a lot I feel as if maybe I'm going mad and I'm constantly sick and in pain, it starts around ovulation with bloating and then I have pain until a week after my period.

[GrittyReads]

For any endo to be properly addressed - and then hopefully properly treated and removed - you need to get your GP to order an exploratory laparoscopy, then if it is endo, and serious enough, he should refer you to a BSGE centre. These are endo specialist Centres, which are all around the country, but you do need your GP to do the referral - GPs should know the rules for doing this - and you need to have had a diagnostic laparoscopy first, if you have not already had one.

You only mention ultrasounds in your post, above, and although transvaginal ultrasounds can pick up some endo, a lap is the main diagnostic procedure.

I would read all you can on here, and on the 'Endo UK' website (link at the top of this page). They host this site on 'Health Unlocked' and you can talk to their trained advisors. Many sufferers of Endo are fobbed off by GPs, or passed around from one medical area to another for investigations. Yet, so may of the pains you describe could well be Endo, but to be treated - properly - a full diagnosis - that is, a lap - is needed. Also, once diagnosed, if serious enough to be dealt with by a BSGE Centre, you must be referred to one; a lot of women's problems are caused by partial removal of endo - which grows back, with lots of endo being missed - in general gynae units who do not have the skills of the BSGE Specialist Endo Centres. If an exploratory/diagnostic lap shows the Endo to be bad enough, women should be sent to BSGE Centres.

As well as reading on here and on 'Endo UK' I would look at 'Lindle's' posts on here and then check out her Facebook site for Endo - she is an amazing mine of info on Endo! Sadly, endo is one of those conditions where we all have to become our own best experts, so keep reading, keep learning, make notes, collect copies of your results, GP/referral and consultant letters etc (you may have to pay for back copies - ask your GPs receptionist, but from now on, always ask that you be sent a copy of any letters and results, etc. - and find out what is being said. Also, whenever possible, get someone to go with you to appointments, and try to get hem to be as clued up as you.

Sorry there are no easy answers, but I hope this helps in the long run.

[nicolajones63]

I Have all the same sympons as you but unfortunately dont have any answers.

Ive had 4 laps to have endo removed, my most recent one to have ovaries removed aswell but have now been discharged as they say there is nothing else they can do and that my pains are not endo related. GI doctors say after doing US scans CT scans and endoscopies that other than a small hiatus hernia and a bit of acid reflux there is nothing wrong. I am so miserable and in pain daily. My opinion is that it is my gallbladder but like you cant get anyone to really help.

I hope you soon get some answers