Under investigation

Hi all

My name is Lauren, I'm 22 and a Physio currently being investigated for the possiblity of endometriosis.

About a year ago I started sudden onset of loose bowels, ranging from loose to complete diarrhoea and was going uptp 20 x day. A month after this started I developed kidney and urine infections that became so regular, I had almost 2 new bouts a week. I was taking cilest contraceptive pill.

I was under gastroenterology who found nothing abnormal, and the bowel is better but still loose, worse around my period.

I am under urology who also found nothing, all my urine samples show either no bacteria or mixed growth, despite my dipsticks being positive for nitrates and leucocytes. I am now resistant to the antibiotics they give me (amoxicillin, ciprofloxacin, cefalezin, fluroxotine, nitrofurintoin).

I saw a private urogynae who is amazing. I was taken off the pill and onto the mirena coil (due to family medial history) and had no periods. However I had it removed after 5 months due to me developing acne. I see my urogynae weekly for bladder installations.

Since coming off contraception, I've noticed my symptoms occur in a cycle and my urogynae has been thinking of endometriosis for some time. In the new year we are going to organise a laproscopy.

My symptoms are urinary urgency and frequency, with burning and often that constant need to go. I have pain between my navel and pubic region, that is constant and like a burning pain but can be spasmodic and sharp. I have pain that spreads up my loin region and back, and in my vagina, as well as my hip. Intercourse is painful - it feels like a deep stabbing pain and I'm generally really sore down below. My bowels are so irritable and always loose with random bouts of awful diarrhoea - I have done gluten free and elimination diets but nothing is helping. The bladder installations have helped to an extent.

Before I was ever on contraception, my periods were irregular, painful and unbelievably heavy. Being on the pill left them semi heavy, and I bled after intercourse. On the coil I had no periods, but bled for about a week after its removal.

I just want to know if anyone else has had a similar experience?

Thank you

[AMJ270985]

Hi, I had a lot of problems with my periods, bowels and bladder infections.

I originally suffered from very heavy, very long periods with what I thought was normal period pains, although never really having normal periods I didn't know what normal was.

I had a mirena coil fitted and my periods stopped, every time I got pelvic pain I was told I probably had a urine infection even though never had any signs of infection in urine sample. I was given antibiotics and cystistis powders.

About 3 years after having my mirena fitted, my periods where heavy, long and painful again. I was told my mirena needed changing and I was put on the mini pill aswell. I had my mirena changed and my period problems just got worst, I saw another gp and he sent me to have my mirena removed and have an ultrasound. I was found to have a submucusaol uterine fibroid, which was in covering my Fallopian tube. I was told I would unable to fall pregnant with the fibroid.

I was taken off all hormone treatments for six months and asked to keep a period diary (I have done this since my periods started ) I recorded everything flow, pain, medications taken, bowel problems, etc.

Over the six months I realised I was experiencing pelvic pain on a daily basis, which got worst when ovulating or when I had my period. I also noticed how loose my bowels where at certain times of the month as well as how often I thought I had urine infections.

I took this diary to my gp and for the first time I was asked to you have pain during intercourse? I answered that it had never been comfortable. With this information the doctor referred me to a gynaecologist.

I saw the gynae consultant and he looked at my notes and decided I need to have hystroscopy and laparoscopy to see what was going in.

I had my surgery last Tuesday, my fibroid had gone, I had a d&c, scarring in my uterus which has been removed. I also has scarring and endometriosis in my abdominal cavity some of which was on my bladder. I have an appointment next week with my surgeon to find out the full extent of the endometriosis.

Everyone is different but endo takes so long to diagnose, I hope your doctors find the answers.

[Loulou24]

I had the same issue. For years Drs thought I had ulcerative colitis and I had to vary my diet to no avail. I have had pelvic pain for a long time and finally had a laproscopy this year and they found endometriosis. An endo nurse rang me after the op and gave feedback on the extent of the endo and said that it does have IBS/bowel type symptoms. Since my op I haven't been as bad.

[angelpie12]

Hi Lauren, I think the problem is that endo (if you have it and it sounds possible) seems to have very similar, if not identical symptoms to IBS. I was told for years I had IBS and was sent away from the doctors many times. They just used to say "have a high fibre diet, plenty of water and exercise" but I knew that it must be something more. If you know that something is not right, don't give up until you get the help you deserve. To find out if you have endometriosis you'd need to have a laparoscopy- has this ever been suggested to you? It's not right that you are having to deal with this pain and discomfort xx

[Hidden in reply to angelpie12]

Hi all

Thank you for your replies! Yes a laproscopy is something my consultant is looking at in the new year.

I've just had my finished my menstrual cycle - this was the first one since coming off contraception - the pain and symptoms leading up to it were a nightmare, and I had awful bowels throughout it. I know I need to wait a period of time to see what mensuration is like without hormones, so I'm not worrying about the actual period at this stage (this one was not heavy heavy, but there were lots of clots and my bladder went into overdrive at times!).

We'll see what the new year brings xx