Have I got Endometriosis?

[Katiefrog11]

Hi everyone, this is my first post on here so please bear with me as its a little complicated. I will start from the beginning. My name is Katie and I'm 20 years old, due to turn 21 in around a month.

I started my periods when I was around 11/12 years of age. At this time, I was unwell with Crohn's disease which was diagnosed at around 14 years of age. My periods have always been heavy and from speaking to my mum, she said I used to really suffer with them being heavy and extremely painful. It would often soak onto bed sheets and she said she used to have to make me sleep on a towel. I was put onto the contraceptive pill which seemed to work wonders and my periods became light with only minimal cramping.

I continued on the same pill for many years with no problems but I did stop taking in when I moved to University. I don't know why, but I thought it would be fine as I wasn't sexually active and had been fine for years. It didn't even cross my mind about how bad my periods used to be. At first, I was fine but after about a year of not taking the pill, I became unwell and have been ever since.

I met my boyfriend in early 2016 and things started to change drastically - infact, he hasn't known me to be "normal". We were not sexually active during the first few months of our relationship but these problems started with a nasty UTI that seemed resistant to all antibiotics - it just kept coming back. An ultrasound showed hydronephsis in my right kidney but a CT ruled out any stones. I ended up being cleared by a urologist after a cystocopy and I was discharged with no explanation.

I then went on the depo injection as we started having sex and wanted to be safe. It stopped my periods completely and the pain seemed to improve slightly. I was able to do more daily activities are live a bit more normally. Just to be sure, we ruled out with Crohn's as a cause for all the pain with an MRI and colonoscopy which was normal.

I ended up coming off the depo and switched to the contraceptive pill for personal reasons and then came off contraception completely a few months ago but since then, I've been developing more and more problems.

So, now we are here-

Horrendous pain during sex - we haven't had sex in months

Right sided, constant pain

Blood in stool

Pain with bowel movements

Pain when bladder is full

Severe groin pain (the worst thing I've ever felt in my entire life)

Extremely large blood clots being passed on menstruation

Lower back pain

Extremely painful periods (taking tramadol and morphine but nothing helps)

Extreme tiredness (I even missed work one day because I couldn't get out of bed)

Irregular periods (me and my boyfriend both thought it was on different dates and then my last one was a completely different date, but like I say I've never been good at monitoring them)

Heavy periods

Constipation/Diarrehea (especially when menstruating)

I actually saw a post about Endometriosis and it was like reading my situation. It suddenly dawned on me that maybe these symptoms could be gynae related. I got referred and saw a gynaecology a couple of weeks ago. I hate to say it, but she was absolutely horrendous and didn't want to know at all. I explained my symptoms but I felt like she wasn't really listening or giving me a chance to explain things. I also mentioned about the hydronephrosis and having never had a reason for that, but she told me I should leave that to the specialists (the ones who discharged me). She examined me which was very painful. She also examined me with her fingers and pressed on my lower right hand side (where my ovary is?) and asked it it hurts and I almost jumped off the bed. After that, she tried to tell me that I'd read too much into Endometriosis - she said that people with severe endometriosis sometimes don't have symptoms but here I am complaining that I'm in horrendous pain. She was awful. She then tried to put it down to Crohn's but when I defended myself, she turned it on a psychological perspective whereby I'd talked myself into having Endometriosis.

I felt distraught but continued to push and finally got put on the waiting list for a laproscopy - all be it with a huge amount of reluctance. She actually wanted me to go on the coil for a few months, but I am a student nurse and I've already took six months out of my course for this problem and I don't want it dragging into my final year of university. I explained this to her but she didn't seem bothered.

An agreement was made that I could have the surgery, but only if I agreed to have the coil whilst I was under anesthetic. I agreed because I wanted the surgery but I'm not too sure if I even want the coil - there was no choice given to me on treatment.

Anyway, the whole reason I'm posting this is because I need a little support. I feel like I'm going absolutely MAD! After the gynae appointment, it's niggling away in my mind that maybe this is in my head. It's ridiculous because I know it's not, but I'm very scared. I'm also not having a lot of support from family, especially my mum! I fee so alone and I'm not sure where else to turn to. I don't know for sure if I have endometriosis, but I'd like to know what your thoughts are.

Thank you.

[Lulububs]

Dont doubt yourself u know ur body and im suprised at a women gynae being so flippant she should know better.

All your symtoms sound like 99.9% of the women on here and would say u def have some kind of gynae related problems.

Do not let her put a coil in if u are not 100% sure you want it , it is your body tell her your goin to to go back to the pill or something just to get her off your back.

The problem you have is your so young, they do not like to operate or mess about in there as they know u will prob want children at some point so they try to make u try all the other things first.

Stick to what you belive and do not let her push u into things as a coil is very 50/50 some people love it and some people it just gives them pain after.

I am 42 and have had all same symtoms as you for years and it is only now i am getting anywhere, in for first lap on tues! And as sick as it is i cannot wait

[Katiefrog11 in reply to Lulububs]

Thank you for replying. You're right, I know my body and I know something is definitely not right but I just cannot believe how I was fobbed off by the gynaecologist. Like you say, reading through many other women's posts I can relate so much, and whilst I don't want endometriosis, it would be a diagnosis and I can deal with it then.

I really hope they can get you sorted! Wishing you all the best.

[Lulububs in reply to Katiefrog11]

Thankyou. So do i as i am getting annoyed now , i have been fobbed of all away along for years now, lucky i have a great gp that has diagnosed it all way along it just shame the gynaes are not as good which is weird as it suposed to be there speciality

[tnewton]

I'm so sorry your doctor treated you that way! It's unfortunate but many of us endo women have had similar situations and it's so frustrating! You go to a doctor with a legitimate complaint and they write it off as "all in your head."

Pretty much every doctor I saw until my surgery in 2012 (I was 21 and had to have an ovary removed as the endo had caused a torsional twist that ruptured it) told me I was being a baby, cramps are normal, and that I need to toughen up.

Severe cramps aren't normal. Debilitating pain isn't normal.

It irks me so much, and feels like medical abuse, but SO many doctors have thrown around hysterectomy discussions like it's nothing. I recently went in with stomach pains and wanted an ultrasound to check for cysts. The doctor didn't even touch me and said, "Oh if you're experiencing pain, then your endo has come back. You should get a hysterectomy at this point."

Sorry for the rant, but you're not alone! Trust yourself to know your body and try to find a different, more sympathetic doctor.

Also, take it into your own hands. Look into diet changes, supplements, books. Dairy is a big pain trigger for me, as is sugar (I know this is a UK forum but I'm from the US, so sugar is in EVERYTHING). Everyone is different but for the first time, I feel like I have more control of my endo monster. Diet plays a huge role!

I've also been going to acupuncture which has helped, both emotionally and physically. When my acupuncturist told me she would do everything she could to help me be pain free, I almost cried (and I'm not a crier by any means). No medical professional had EVER said those words to me.

As for support from your family, I was kind of in the same boat. No female in my family had ever been through what I was going through, but online sources like this one are amazing!

Best of luck to you!

[Katiefrog11 in reply to tnewton]

Thanks for replying. It's so horrible to have doctors dismiss us and tell us we need to toughen up. Chronic pain is not normal! Thanks for the suggestions, they're all things I will look in to! My only huge worry is having the lap and them not finding anything, then I really will feel mad! Best wishes.

[Rach3187]

Joys of living in chronic pains... I'm.use to it....

My cycles use to be regular since a year ago it messed up completely.... Saw one dr she even said its odd but my usual gp said its all fine.... Well I use to get it every 28 days and now 21 days but the days I bleed is in a odd pattern each month if that makes any sense.....

My mood swings is messed up too I snap at people and have no reason why it had happened a few times now.... To this I'm unsure weather to wait till I move and then get seen by a different Dr and see hopefully there nice

[Katiefrog11 in reply to Rach3187]

Thanks for replying. It's funny you say that about mood swings because I'm exactly the same! Sometimes I snap and I really don't know why, or I'll just put myself into a bad mood for no reason whatsoever. It's so frustrating because I don't want to be that way. I wish you the best of luck with getting sorted - keep pushing!

[Rach3187 in reply to Katiefrog11]

Yeah btw I'm tracking my cycles which helps. As I have 2 different apps for that. I.also suffer from IBS but that's controlled by diet changes. When my cycles due to start it's light spotting then heavy either last 5-8 days so weather that's normal or not either? I use to get large clots not anymore cos I'm takin meds for it to relive cramping and lower back.and thigh pains. I don't take it all the time only when I need to. Is this the same for you?

[Katiefrog11 in reply to Rach3187]

I've started to track my cycles but I've only had one so it'll be in the next few weeks to find out if they're definitely regular or not. I believe they're irregular though because my boyfriend thought it was the beginning of the month, I thought it was the end and my period just gone was on the 18th so who knows!

With heaviness, mine are heavy but in like a weird way. I can't explain it but it's mainly large clots and pain. My last period I had to take tramadol because the pain was like my ovary going through a shredder. Then a few days later I passed a huge clot and that seemed to ease a lot of it.

It's difficult because I haven't had proper periods for a while with being on various methods of contraception but the one I had in June didn't feel right. I'm getting the cramping pains all the time now as well as the other symptoms. It just tends to get worse when I'm ovulating and menstruating.

[Ardenrose]

Your story reminds me a lot of my own unfortunately. I saw a female gynae who fobbed me off and forced me to have the mirena coil fitted which only made my symptoms worse. I saw 3 different gynaecologists before I finally got diagnosed with endo. Even then the treatment I received was poor. I had to do my own research online to find out about excision surgery, diet etc.

Unfortunately as the recent APPG report on women's health discovered, women are too often being let down and poorly treated when it comes to endo. My advice would be to listen to your own body and push for the treatment that you want. Don't be pushed into having something that you aren't comfortable with.

If you can, get a referral to an endo specialist who will be able to identify and effectively treat the disease if you do have it. There are BSGE centres around the country for example.

All the best x

[Katiefrog11 in reply to Ardenrose]

Thanks for replying. I'm really not convinced about the coil so I think I will refuse and make a decision upon diagnosis. Thanks for all of the advice, best wishes x

[IndigoMoon1234]

Did she perform an ultrasound?. It cannot definitely tell you if you have endometriosis or not - only a laparoscopy can do that - but it can tell you if there are any lessons on the ovaries - be they endo patches or ovarian cysts.

My gynaecologist pressured me into getting a mirena coil. With hindsight it was the wrong decision and they should have tried the pill first. In the end, the op was difficult and he couldn't insert the coil anyway. My friend had one and she didn't like it, so she had it removed. I overheard my gynae trying to persuade other women to have coil fitted while we were all waiting to go into theatre. They all said a flat no.

In your situation, I would probably ask for a referral to see another gynae and definitely have an ultrasound done before even considering a laparoscopy!

[Katiefrog11 in reply to IndigoMoon1234]

I did have various scans including two ultrasounds for urology but these found nothing from what I was told. She didn't offer me any further ultrasounds, it was either laproscopy or marina coil! It's shocking how many gynaecologists actually try to push women into the coil, I felt like I didn't have a choice at the appointment! Best wishes x

[IndigoMoon1234 in reply to Katiefrog11]

If the previous scans were for urology, they might not have focused in the right area. My previous scans were all conducted using an internal ultrasound device.

Try to get a referral to a different gynaecologist. It is senseless to undergo a laparoscopy, if you don't need one. The internal ultrasound of the will show if there is something on your ovaries that needs further investigation.

I had a laparoscopy last year and have been in pain ever since then. I had several scans over the years and they showed either cysts or endo patches but ironically there were none present on the day of surgery, so surgery was pointless. Do not have surgery unless you really need it. Get an ultrasound first to see if there is anything on your ovaries!

Either ask your GP for a referral to another gynaecologist or go to the A&E department of your local hospital the next time the pain gets bad and ask for ultrasound!

[Rach3187]

I did have ultrasound that checked ovaries and everything else was all fine, so I just have to put up with the mess up cycles just keep a track of it all, I wi gt seen by a dr probs when I move.