Endometriosis?

Hi all

I'm new here and feel a bit daft posting because I haven't actually got an endometriosis diagnosis. I just want to know what people on here think about my symptoms, as a doctor has suggested that I might have endometriosis and it's never something I've really considered because my periods are regular,and even though heavy, I wouldn't say they were extremely heavy.

So, nice to meet you, and I aplogise for 1. How long this will be and 2. That I am going to massively overshare. If anybody can face reading my huge rant I really really appreciate it!

Here's my symptoms:

I have suffered for limb pain & joint pain for 5/6 years now, and realised a long time ago that it was related to at least affected by my menstrual cycle. I've been to my GP and various specialists many times because of this but it's always for tests/scans looking for arthritis etc. Nobody has ever really given any importance to the fact the pain mirrors my cycle. The worst pain is in my legs- my knees, ankles & his feel like I have tooth ache in them (that sounds weird,but it's the only way I can describe it), and I get an intense pain radiating from my lower back & tail bone, through my buttocks and down my legs. I also get pins & needles in my knees and feet quite regularly. These symptoms tend to begin about a week before I ovulate, geting worse up to and around ovulation, then tail off a bit before getting very intense again for the first few days of my period. The leg pain in particular has got more intense on a monthly basis over the last 6 months.

My period is doesn't last that long (4-6 days) and my cycle is fairly regular (28-32 days), but I get very bad cramping around the time of ovulation, and around the first few days of my period. I bleed very heavily for 2-3 days with quite a bit of clotting then it tapers off. This has been normal for me for around 2/3 years- up until that point I had very heavy and long periods every month. I have always had very bad period cramps, often needing time off in secondary school and college. If anything, my cramps have improved over the last 5 years. I have developed a new kind of period pain over the last 2 years, that feels like cramps but in my vagina and often rectum too, this tends to be throughout my entire period.

I also get UTI/cystitis type symptoms (feeling like I need to urinate constantly but not being able to, burning sensation in my bladder) almost every month at the end of my period, and get thrush type symptoms every 2-3 months between ovulation and my period. I've had thsee symptoms intermittently for around 10 years, but they've been getting more regular over the last 2 years.

I bloat very badly (have a solid, pregnant looking stomach) between ovulation and my period, and get a lot of bowel pain and sometimes constipation. It's also sometimes painful and very tight feeling in my rectum when I empty my bowels around this time. I get very loose bowels from the day before my period starts to around the 2nd day, often with very intense bowel pain at the same time as the usual period cramps. I often get nauseaus at this time too, and sometimes get some dizziness.

Last but not least, I have had problems with breast tenderness for as long as I can remember-my breast get very tender, swollen and hot to touch every month from just before ovulation to around the 2nd day of my period. I can barely walk sometimes without having to wear an extremely supportive sports bra (I normally have quite small breasts and only really wear a bra for vanity-I'm much more comfortable without one and wip it off as soon as I get home). I've had to buy bras in a larger size to accommodate the swelling when it's at its worst. I have had lumps in my breasts scanned several times in the past but I'm just prome to harmless cysts- I get these regularly and they tend to swell with my breasts. I started taking evening primrose oil around 4 years ago and this seemed to alleviate my breast tenderness/swelling,but over the last 6-12 months it has come back with a vengeance. I regularly (every 2-3 months) get what feels like a swollen gland or something similar to the cysts in my breasts in my crotch (the crease between my crotch and right thigh to be exact). I've never been to a doctor as it's always gone down by the time I get round to planning an appointment, but it gets hot and painful just like my breasts.

I have had external pelvic ultra sound scans and ultrasound scans on my breasts and hands. I've had what feels like a million blood tests, a feaces sample test, and countless urine tests. The only thing any of this has every found is a few harmless cysts, occasional anemia, and constant vitamin D deficiency (even a slight one when taking prescribed supplements). I also have a history of UTIs, cystitis, and kidney infections. 6 days ago (3 days before my period) I developed a bad pain in my rectum- genuinely feels like a bread knife is stuck in there, that is worse than any rectal pain I've had before. I went to my GP on day 3, and she examined me and referred me to the hospital for a surgical consult as she thought I had a rectal abcess due to finding puss. After ten hours of sitting around on a very sorry bottom, with intense first day of my period cramps, I was finally examined by the surgeon (I never want a male doctor to have to stick his fingers up my butt again) and he said there was no puss, just a lot of mucus, and that my rectum was very inflamed. He asked me some questions about my history and said he thinks that I might well have endometriosis-I hadn't even realised until he told me that endo could affect the bowel & bladder (even a friend I have who has endo didn't know this!). He has referred me for a colonoscopy and a CT scan of my pelvic area. At first I was a bit shell shocked, as none of the countless doctors i've ever seen have ever linked all of my symptoms together before, and any that have got close have basically told me I suffer from 'problem periods'. I've been reading up a lot since then (am off work because my rectal, leg and pelvic pain is still so bad I've been waking up in the night crying, even after codeine-which I can't take other than at night time as taking it all day would make me constipated, which would make the rectal pain worse) . I'm finishing my period now and hoping that some of this pain is going to subside because I'm going insane.

I realise I can't do anything until the tests come back, but I'm obsessing a bit, I feel almost excited about the prospect of a diagnosis that might make me feel less insane or like I'm an old woman with my constant aches and pains. I don't want to have endometriosis, but at the same time I can't take much longer not knowing what the problem is. I feel guilty all the time for being so useless and always I'll and/or in pain because I feel like I'm no fun anymore to my fiance. Our sex life has definitely suffered with some of the symptoms getting worse over the last 2 years. And this whole sore bum thing is making me feel about as sexy as, well, a rectal abcess.

If anybody has any advice, any similar experiences to share, or any guidance around what I should do to prepare for tests/diagnostic discussions I would be so grateful. Thank you so much for reading this far, I've been needing to just get all this out there for a while and to be honest it feels great to do it even if nobody reads this. I'm not very good at admitting I'm in pain or admittin I can't cope, I think sometimes that's why doctors don't take me seriously, I never get emotional enough in my appointments and tend to downplay the pain a bit out of some weird embarrassment thing. I hope you don't mind that I've made up for that here by telling all to a bunch of strangers.

10 Replies

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  • Hi, I am also new here and have not been diagnosed either so know how you feel about posting as I felt a bit silly about it too.

    Just wanted to say that I can relate to some things as I am also really suffering with mainly leg and rectal pain. I get the pain through my buttocks and down the back of my legs and also a pain in my bum (literally!). Also feel like someone of about 90 years old with all my aches and pains too!

    I'm afraid I can't comment on if it is endometriosis or not or how to deal with it as i am also awaiting further tests and a diagnostic laparoscopy. But just wanted to let you know that you are not alone with some of your symtptoms.

  • Thank you so much for reading. It is actually reassuring knowing somebody else has similar symptoms-especially the rectal pain as I've never spoken to someone else who has this! It's horrible isn't it? I'm glad to hea that you're getting a diagnostic laproscopy, from experiences I've read/heard this seems to be the best way to get an accurate diagnosis. I'm apprehensive about my referrals as I've read that CT scans don't often show much and I've not come across anybody who has had a colonoscopy as a diagnostic tool for suspected endometriosis- but at least someone has finally linked all my symptoms together, and the tests will hopefully rule out other issues if nothing else.

    I hope you get your tests soon and get a diagnosis and some treatment! Xxx

  • Yeah the rectal pain is definitely horrible it's the first symptom I experienced and just found it so strange!

    I also feel very apprehensive about more tests as like you have read they do not always show things.

    But at least they have found a connection in your symptoms and will hopefully get things moving in the right direction towards a diagnosis for you too!

    Good luck! X

  • Thank you, and I hope you get a diagnosis and some relief soon!xxxxx

  • Hi, I was diagnosed with endometriosis 11 years ago. My symptoms are similar to yours - I have pain in my back radiating down my legs to my ankles. When it is really bad, it feels my whole legs are aflame, other times it is just my back/hips and ankles. I have endometriosis in the pouch of Douglas, which is what causes these symptoms. I myself don't have bowel issues, but endometriosis on the bowel can certainly cause the bowel issues you describe. It's worth keeping in mind that while the scans may show up something, endometriosis can only definitively be diagnosed by laparoscopy, so don't be put off if all the scans come back clean.

  • Thank you so much! It is good to know what could actually be the physical cause of my leg pain, I want to go in to this with as much knowledge as possible so I can make sure it goes somewhere. I will make sure that I request a laproscopy should the other scans come back clear, and will also mention that my pain seem consistent with endo on the pouch of Douglas.

    Thanks again for you time and response, I can't tell you how much I appreciate you sharing your experience with me.

  • HI there,

    I am NOT diagnosed with endometriosis. I went to a doctor a few times in NZ and they were useless.

    I have had pain all my life and so am just used to it.

    However, at the start of this year after returning from NZ I had very bad fatigue. I put it down to jet lag, but it just went on and on.

    My periods have slowly been getting worse pain wise, until in Feb I had one that was as painful as giving birth.

    I looked up info and it said on average it takes 7 years here to diagnose (I am 43).

    It also said that I would have to first go on pills for a set amount of time before I could get diagnosed, laps, etc.

    I have all the same symptoms as you do - luckily for me, my sister-in-law is a world leading Naturopath doctor in period health.

    I bought her book when it came out last year, best purchase I have ever made!

    I looked up the book to see what health issues have a) severe clots, and b) severe pain.

    I do not have all the symptoms of endo, but a lot of people do not.

    I chatted with her online and she said it seems very much like endo is what I have.

    So, I started on her recommended diet and supplements.

    She has successfully treated thousands of women, and, even though I was in emergency medicine, I dont like medication much or doctors.

    I figured this was a good place to start.

    That was 10 weeks ago and since then I have had less fatigue, and for the first time in my life I could control period pain with paracetamol! a miracle in itself.

    The book is The Period Repair Manual, Dr Lara Briden.

    She is on fb and has a webpage.

    She is also great at answering people's questions and often has online video chats.

    Take a look

    All the best

    Lisa

  • Thank you Lisa! I will definitely get that book, it sounds so helpful. I have read about similar average timescales for diagnosis, it seems to be a huge problem that doctors tend to treat anything in the pelvic area like it's just problematic periods. It's not just endometriosis either- a friend of mine recently got a diagnosis of pelvic congestion syndrome after over 5 years of being fobbed off by doctors. That only even happened because another doctor happened to overhear a conversation with her gynae and he specialises in pcs and is an expert in the treatments. At least in that situation there's the excuse that pcs is relatively rare and unknown, but I've just learned that endometrioses affects an estimated 10-20% women! The medical professional as a whole as well as girls/women theme elves clearly need more education around endo, it's so common and yet most people don't seem to know anything about it unless they have it!

    Thanks again, so much, for your time and your help, I am obviously so sorry that you have suffered with this pain for so long,but I'm also so grateful to hear about someone else experiencing similar pain to me, it's ofly comforting to know how many women there in this community!

    Xxx

  • Sorry to hear you feel so rubbish! I'm 21 and have had EVERY one of your symptoms over the past 10 years. I was told it was IBS, arthritis, anxiety everything!! I persevered big time with my GP & within 6 months of being referred to Gynae I had been told it definitely sounded like endo, i'd been given pain relief, two different hormones to try, blood tests & 3 ultrasounds (ext & internal) and finally my laparoscopy that confirmed 'minimal' endo. I was told the size has NO correlation to your symptoms/pain but the location does. I also had an MRI scan to check for endo inside my bowels as I have severe bowel issues too - it showed no endo around there but more around my pelvis & also that I have Adenomyosis! I have the Mirena Coil now and for the first 12 months was feeling pretty good for it. Then it was discovered I have a complicated cyst on my left side which is causing issues again. After no bowel endo was found the Gynae referred me to the bowel clinic who now think I may have Crohns disease too and I am booked in for a Colonoscopy on the 6th July.

    I know it sounds terrible but PLAY UP to your symptoms at your appointments. It is the only way you will be listened to & checked out properly! You don't need to always be strong about it - talk about it, research it, question it. You have to do it for your own sanity half of the time unfortunately. Even if it isn't Endo it sounds very hormone related!

    Hope you get some answers xxx

  • Your experience before you got the gynae referral sounds so much like mine, it's always arthritis and IBS that gets mentioned, and anxiety gets brought in to it a lot too. I often come away feeling like it's all in my head.

    I've had several ultrasounds but only ever external, I'm considering asking my doctor to refer me to a gynaecologist now rather than waiting until after the colonoscopy/CT scan like the consultant I saw said. If there's one thing I've learned reading the experiences of women on thus site it's that I need to ask for what I need.

    I'm sorry to hear that you are having further problems after it sounds like you got some relief, I hope they get to the bottom of it all soon so you can get a good treatment plan in place! I find that when my bowels are bad the pain and discomfort tends to be even worse than the cramping- and my legs tend to hurt even more when I have bowel/rectum pain too, so I really feel for you with your bowel problems and I really hope you get some real relief soon.

    Thank you so much for sharing your story with me and your words of support. I only joined this forum last night and I already feel like it's the best thing I've ever done, I already feel more confident and prepared to make it clear to my doctors how much this is affecting my life.

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