Maybe endometriosis? Prostap recommended.

[Missy100]

Hello everyone I just joined this group and I am hoping to get some advice, whether medical or experiences people have had, etc.

A lot of background, but may help:

10+ years ago, at an estimate, diagnosed with PCOS.

When puberty started and I began to get PCOS symptoms it was ultimately dismissed as in my head or due to my weight and no one ever believed that my weight was not completely a product of me choosing to over eat and eat foods I did not admit to eating. Symptoms included irratic heavy and painful periods , weight gain, thinning hair on my head, dark hair cropping up on my stomach and face, etc etc.

10-12 years ago I was in seeing my new to me GP. He must have been reviewing my records as out of the blue he asked me if I was ever tested for PCOS. Ummmm what is that? On to ultrasound, blood tests, diagnosis and referrals. Tried Metformin for some time but after over a year of an award struggle where I could never be more that a 2 minute dash from a bathroom we all agreed I just couldn't tolerate it. Spironolactone ia a great water tablet but seemed to have no affect on my hair growth. I just got on with life, accepting the diagnosis and learning to understand some of the symptoms and small things I could do to make them a bit more tolerable, and to be honest as I got older some of the symptoms mellowed out a bit. Weight has always been a struggle and continues to be so. Some of the symptoms didn't tick the boxes of normal PCOS symptoms but was told everyone is different - and they are.

About 2 years ago, during my period, I started to get much worse cramping than ever before. I began to get a pain in what I can only describe as my lower back - but not like injured my back pain, during my period. I have always suffered with diarrhoea with my period. This became a lot worse. Then the cramping and back pain and bowel issues started to come on sooner before my period....then last a little bit after my period. Penetration sex started to become uncomfortable, and then painful at times. My bowel habits now tend to swing between diarrhoea or constipation, regardless my diet. Bowel movements have started to more often than not cause pain and discomfort. The hardest thing to live with, I want to say is the impact to my sex life. But really it is the back pain. I tried heat...pain meds...than stronger pain meds from my GP. I have had x rays and ultrasounds and then I discussed endometriosis with my GP. My mother and her sister and their mother had it. I shelved it as I was diagnosed with PCOS. My GP referred me to gynaecology. Around the same time I saw another Dr about weight related health and spoke about my health and he brought up that he wanted me tested for it to address my back pain and wrote to my GP about it as well.

I went to Gynaecology. It was a joke. He refused to discuss my back pain. One of my ultrasounds had showed 2 larger cysts on one of my ovaries that stuck out and he said they would not have caused my back pain. Kept bringing up my PCOS and wanted to test me for it. I explained my history and why Metformin didn't work for me. Then said he might have to put me back on it anyways. He did a pelvic exam and pap and it was all I could do not to scream it was so painful. It started up the back pain and it didn't start to subside for 3 days. He said we were not there to discuss endometriosis and set me instructions he expected a significant weight loss and a detailed record of it when I came back and dismissed me. He also treated his nurse like she was his minion.

I told my GP I was unhappy. She was at a loss as it is the department and offered the hope I would see someone else when I went back. And I did.

This time I was belittled and talked to like I was stupid and told that my back pain had nothing to do with Gynaecology and as I was already diagnosed with PCOS it would not go away and I would have it for life therefore there was no need for me to have been retested. I kept trying to bring up endometriosis and he finally said the only way to check was laparoscopy and he wouldn't because I was overweight. Then said he would send me to have another ultrasound to monitor the 2 cysts and that was all he could do for me. He then dismissed me as well.

The ultrasound paperwork was filed for an upper abdomen exam and it took a lot of backing and frothing to finally get that sorted and had my scan. The lovely lady who did my scan said there was nothing out of the ordinary not expected to be seen with PCOS and could not see the 2 cysts previously recorded.

So I went to my follow up today. I went in. He said: So...the ultrasound confirmed the previous diagnosis of PCOS. I believe that sorts everything out and that is us done then. I was annoyed by this point and brought up...well no - the issue I came to you for in the first place has not been addressed. He point blank said my back pain had nothing to do with gynaecology. I will add here that at no time have I been allowed to explain where, when, or how how the back pain affects me. I have not been allowed to discuss any of my other symptoms. I have, each time I tried to discuss what I am experiencing been shut down. I then snapped by that I was referred because the back pain and symptoms started in direct association with my periods. He then reiterated they would not do a laparoscopy because I was overweight. He then said he would give me a needle to stop my periods and that if it was endometriosis the pain and sometimes would all go away. If they didn't it wasn't endometriosis. He said there are some side effects like hot flashes and sweats but I will give you a pamphlet you can read and then you can have the needle if you want (he waved at the nurse and ordered her to get the pamphlet part way through). The nurse returned with the paper from the inside of the medication box and he confirmed this was what he wanted and told me I could sit in the hall and read it for a couple minutes and come back in and get the needle if I wanted it. I said I wanted more than 2 minutes to decide. He settled on seeing me in 4 weeks and that they would give me a medication to kick start my period, if I had not just had one (they are erratic) and dismissed me. Insert sarcasm - I love being dismissed from a medical professionals office, makes me feel so warm and tingly inside - end sarcasm.

So I have read this pamphlet. There are a lot of possible side effects. I have read some POVs online of people who have taken the drug, but already diagnosed and often having had other treatments and/or taking additional medications with it. It far from seems to be a miracle cure - often causing many side effects and not magically stopping all the other symptoms, pain included. And on top of that I don't know for sure that I have endometriosis and I have the sinking feeling that if I take it and it is not a cure for all I will just be dismissed as it obviously isn't endometriosis then.

At the moment I am taking Mefenamic Acid 500mg x3 a day and Tramodol 50mg x 4 a day, as needed for the pain - prescribed by my GP.

If you have made it this far, any advice/experiences/information very much welcome and appreciated.

Thanks in advance!

[healthkick1973]

Hi,

Just letting you know that an injection to stop periods (depo contraceptive is one I’ve been on for years) does not stop endometriosis or its symptoms in some cases. I’ve been on and off many different types of contraception which has stopped my periods completely, for many years. However in the past year my symptoms have got unbearable - such as painful sex, lower back pain, menstrual and abdominal cramps, diahorrea and consolation on and off, painful passing of urine, painful bowel movements and period like pains when needing to poo, etc. Yet I do not get a period, and so this isn’t always a cure. I was told I have IBS at first, which may still be the case or other dietary related allergies; however if endo is left untreated and grows on the abdomen then all of the above symptoms are associated such as cramps, diarrhea etc. which is why my hospital suspects this may be the case.

I’m currently in referral with my gynae who is testing for endometriosis as I display all of the symptoms. I would recommend trying to see a different doctor or being referred to a different hospital as they seem extremely dismissive and unhelpful! If left untreated endo can cause serious problems and only worsen so I would try and get to the bottom of your problem one way or another!

[Missy100 in reply to healthkick1973]

Thank you for replying and the information, including your own experience. Unfortunately I am stuck with the gynaecology department I have been referred to. It is the only hospital they can refer me to where I live - they only allow referral to a different hospital if there is no resources in the local one. It is headed by one consultant and everyone else is under him. I have seen him and another gyno who was working under him. I am beyond frustrated.