Endometriosis

[SCeee]

Hey,

I am feeling desperate and looking for guidance. For the last 3 months, I’ve been in agony with stomach bloating, lower abdominal pain, sharp lower back pain, heavy/clotty periods, nausea + vomiting, and exhaustion. I’m constipated for a few days then have explosive dihorrea the next. TMI but during my cycle my dihorrea is awful and so irratic. Had bloods done in May which showed low folate so thought maybe this was contributing to my symptoms. My period all my life has usually been regular and to the day, but for the last 3 months it’s been completely irregular and out of sync. It’s starting to affect everyday life - all month round. My stomach is so distended for my entire cycle, worsening during my period. I feel so sick, minimal appetite and just so exhausted by all this. The pain in my lower back and stomach is unbearable - sometimes I feel like I’m going to pass out. I’ve also tested my urine on 2 separate occasions which has shown blood in my urine but as per usual - GP’s don’t care. This was done prior to period starting so understand this could have caused traces of bloods.

I took matters into my own hands and booked a private ultrasound which showed nothing. Have had routine bloods done at GP (I’m a nurse, and believe the blood tests they’ve taken aren’t appropriate for my symptoms) which also came back normal. I’ve contact the GP constantly and all the can offer me is a telephone consultation in 3 weeks. I’m at my wits end, I’m in so much pain and feel so miserable - does this sound like endometriosis? Every single month it’s getting worse :( I have a 3 year old too and it’s breaking my heart that I don’t have the energy to be able to give him my all at the moment.

You need to be referred to gynecology, those symptoms could also be some type of cancer. I have endometriosis and it wasn't a sudden onset like that, I was always irregular with heavy periods, I started getting a lot of pain in my early 20s.

Till now you seem to be asymptomatic - which doesnt sound like endometriosis to me as it is a chronic illness and would be like having much more persistent issues ongoing for year and onset much longer ago.

Also your symptoms are very unspecific as in they could be gastrointestinal related or gastroperiss, something like an infection, cancer, autoimmune etc. It could be ovarian cysts or fiborids, jt could be your stomach or bowels (ulcerative colitis, crohn's disease etc).

You wound need to try the mirena coil and If the mirena coil and NSAIDs resolve it long-term then you likely have asymptomatic or less disabling endometriosis/ perhaps adenomyosis.

The stages of endometriosis are actually about how it impact your fertility - so a higher stage more impact on fertility but not pain. So a person with stage 1 endo could be disabled by it and have severe complications but a person with stage 4 may not.

But you could also be adenomyosis where the lining of the womb grows into the muscle of it, but unlike endo is localised to the uterus only. Thus, symptoms are mainly a couple days before a period and during your period. Main endo symptoms:
• Irregular or heavy periods
• Pelvic pain
• Pelvic pain on opening bowels (dyschesia) and wider gastrointestinal symptoms (diarrhoea amd constipation)
• Pelvic pain on passing urine (dysuria) and bladder symptoms sometimes
• Referred pain to the tops of the legs or back
• Fatigue

The main symptom of endometriosis is not actually period pain because endo is not a period condition - it's a whole body inflammatory condition where the endometriosis tissue even produces its own oestrogen and the pain is felt throughout the month not just when on your period.

Can you be more specific about your symptoms and what the investigations you had, have found so far? If your pain is severe it might be an underlying condition. It could be fibroids or ovarian cysts.

Are you symptoms just on your period or elsewhere during the month? (Because if its just on your period, unlikely to be endometriosis).
What symptoms do you have during your period? And if you have symptoms not on your period - what are they? Is the pain worse on or off period?
If you had a transvaginal and/or pelvic ultrasound normally it can pick up adenomyosis. I recommend going to your GP ask for a pelvic ultrasound, a transabdominal ultrasound and a transvaginal one to see what they find.

You may have 1. Primary dysmenorrhea (heavy bleeding and painful periods and pelvic pain with no condition or cause or 2. Secondary dysmenorrhea so a condition e.g endometriosis or adenomyosis causing it. You will need to try NSAIDs and mirena/pill and Tranexamic acid first before any further scans like ultrasound and MRI. Often if the pain is significantly reduced with said treatments its more likely (not 100%) to be primary dysmenorrhea. Also very dependant on whether you only have symptoms on your period or across the month as to whether you have primary or secondary.

Then if ultrasounds pick up on anything (pelvic ultrasound or transvaginal) you may need to have an MRI to see endometriosis. However, the only way for definite diagnosis is a laparoscopy and then they will often excise the endometriosis tissue if they find it etc. But endometriosis is a chronic illness and cannot be cured, after surgery it will grow back, it cannot be excised from everywhere to leave organ functioning intact and then post-surgery adhesions often form.

I wouldn't go down the gynaecology route just yet - stick with your GP and investigate everything - bowels, liver, gallbladder, stomach etc and also ovarian cysts, fibroids etc. Once you get more definitive ideas from scans, bloods, stool tests etc - you'll be able to narrow down a speciality to go to if further secondary and specialist intervention is needed.

You can have stage four, deep infiltrating endometriosis and be asymptomatic.

Endo rarely shows on ultrasound; you need an MRI, or, ideally, an explorative laparoscopy.

Well yes you can but if you're asymptomatic then you don't really need as much interventions - because it's not impacting your life and thus you won't be considered disabled or at the very least affected. Unless you want to have kids, it may be affecting fertility (which would be a symptoms). My point is it's only been 3 months and before that fine, normally it doesn't just come out of nowhere but slowly emerges over time and symptoms worsen. That hasn't happened in OP's case. The endo can still be removed but that could worsen it after with adhesions and scar tissue. Often they decide not to do anything unless you start having symptoms. Plus then if its deep they may not want to remove everything unless she's willing to perhaps get a stoma and that may be worse than actually not having the whole deep excision. I'm just saying explore everything now, before going down endo as those symptoms are symptoms for tons of different things. It could be a autoimmune disease, bowel disease like crohns or IBS, gastroperiss, other abdominal issues and even if it is gynecological it could be cysts or fiborids or PCOS, or adenomyosis or other things as well.

@SCeee What type of ultrasound did you have? I'd see if there's another GP in your practice who is nicer and more on it, perhaps start my asking reception whether there's one with a special interest in women's health. I'd see about different bloods as well. Also the blood in urine is serious, that might be more the kidneys and bladder and you may need to see urology. I'd want that investigated urgently as well.

@TheLivelyViper so my symptoms are continuous throughout the month - persistent stomach pain, bloating, lower back pain, nausea and vomiting. The days of my period the back pain is debilitating + I have (sorry TMI) explosive dihorrea.

I started a low carb diet to try and lessen my symptoms but unfortunately it’s not done anything 😭 I just had a normal ultrasound of my upper abdomen, pelvis, ovaries, liver + kidney. I also did a QFit sample 2 months ago because of the persistent diarrhoea but that came back negative. I’m just at such a loose end and it’s affecting every aspect of my life. I vomited 6 times at work on Thursday. I did suspect gastro problems - potentially acid reflux and other auto immune problems, so I will push that with the GP? I did think maybe prolonged issues and inflammation may be the cause behind my now irregular menstrual cycle?

I just feel like the GP’s are fobbing me off completely and think I’m at it when I’m really not 🥹 it’s making me teary and emotional when I’m usually so upbeat. My husband I have a child free day today, so we took our dog for a walk. 10 minutes in I had to come home because I couldn’t hold my bowels. Explosive dihorrea and a soaked tampon with multiple clots 🥹 sorry, just so happy to have somebody to speak to about this.

Okay so first new GP - just book it with someone else. Second start tranexamic acid for the heavy bleeding (take it 3/4 days before your period starts and throughout your period). Then start on an NSAID (naproxen, mefenamic acid or another one). Again take it well. Then I'd consider getting a mirena coil as well. That's all immediate and can be done really easily. You may want to try a low-dose opiods but GP will be reluctant to prescibe obviously perhaps just for your period try Co-codamol. You should also get an antiemetic to take daily.

Then I'd get the blood in urine looked into ASAP. I'd get another ultrasound - transvaginal and see what it says. Perhaps am endoscopy or better a flexible sigmoidoscopy to look at your lower bowels. Following that referral to gastrology - even if it's endo on the bowels, it would likely be combined with another bowel condition that needs looking at. You can get a transrectal ultrasound as well from your GP.

@TheLivelyViper thank you for this 😘 I can’t actually take NSAIDS as I’m asthmatic. I do have a prolonged prescription of cocodamol as I underwent bilateral jaw surgery last winter for bilateral locked jaw and dis displacement. Would the coil help with the bloating?

That’s what I’m going to do. I’m going to push gastro referral, and also speak with a female GP who I’ve been to in the past who is kind. It’s all so debilitating isn’t it 😭 I was also severely anaemic after my child’s birth 3 years ago so have had prolonged issues with my iron stores which resulted in an infusion! So going to ask for repeat appropriate bloods too.

@JLou08 this was my thought exactly! But the GP’s just like to tarnish everything under ‘female PMS or bad periods’ 😭😭

You should also get an anti-motility drug from your GP for the diarrhoea and also antispasmodic meds for the cramping of the bowels and pain. Those should all help along with NSAIDs, mirena/tranexamic acid and antiemetic. I'd then get the scans booked (transvaginal ultrasound, some new different bloods, stool sample when you have diarrhoea, push for a sigmoidoscopy as well)

Like I said earlier this could be endometriosis tissue on your bowels - even if it is, it's likely accompying a bowel/abdominal condition as well, as the gastro symptoms are severe and you don't want to just go down the gyne route and ignore a potential other problem that seems likely. I'd see what the transvaginal ultrasound shows first. They won't do an MRI without you trying the medications I've suggested first and seeing whether they work across 4ish weeks. They also will want something from the transvaginal ultrasound even something small but if it doesn't find anything they may still do but I'd guess only after trying those medications. The sigmoidoscopy might also find something and then an MRI will be easier to get plus any surgery if needed. As well as the stool tests and some further bloods.

On the GP I'd go to someone else at your practice - ask for someone with a special interest in women's health and/or gastrology etc. Good luck, I hope you find relief soon. I'd really push that your a nurse as sometimes that makes them take you more seriously.

I had to request a second opinion after spending over a year being fobbed off by the same male GP. Second opinion was from a female GP who put in an urgent referral to gynecology. I hope you get sorted soon. I had surgery to have some endo tissue removed and it made a huge difference.

@JLou08 I’m so glad you got the treatment you needed eventually! How frustrating is it though that we have to fight to be taken seriously? 😭

@TheLivelyViper okay - that’s what I’ll do! I’ll contact them on Monday morning. Thank you for all your help and advice! I really appreciate it. Usually as a nurse I’m the one handing out advice 😂 but I just feel so completely failed by the GP’s at the moment and I know somethings wrong!! I’ll keep you posted x

I take NSAIDs despite having moderate to sevre asthma. My doctors decided its a trade off and we changed/increased my asthma meds and watch it. Honestly I'm in pain and I just try to manage them both. You could perhaps just try them in the days leading up to and on your period. I have endometriosis, adenomyosis, PCOS and other bowle conditions as well as bladder conditions as well.

The mirena coil, thins the uterine lining so less bleeding and less pain because it does reduced cramps. Tranexamic acid reduces bleeding a lot, so definitely try that as soon as you can. I'd also get antispasmodic medication, antiemetics and anti-motility meds as well.

It took me years to be properly diagnosed with endo. I had similar symptoms to you OP - the pain, bloating and diarrhoea. I also had pain when urinating during my period and was constantly fobbed off with the suggestion I had a UTI. I was only diagnosed via a laparoscopy and had to go private in the end. I have had 3 laparoscopies in total and a hysterectomy after having my kids and while I would hope GPs are a bit more switched on when it comes to diagnosis and treatment, I am not so sure ☹️

I have almost identical symptoms to you (which have gone crazy since I've been in perimenopause). I've had so many gastro tests and all came back as normal which seems ridiculous seeing how rough I often feel.

Two years ago, at the age of 50 I was diagnosed with endometriosis and adenomyosis. My endo is deep and adenomyosis diffuse. I am due a hysterectomy soon for the adenomyosis and hopefully will have any endo excised at the same time.
My endo was discovered during a pelvic MRI scan at MY request. If I hadn't I would still be none the wiser.

I would definitely ask for a gynae referral but make sure it's with an endo expert. I was under a regular NHS gynae for 12 years and never once did he suggest endometriosis even though I told him my sister was diagnosed at 45. See if you have a BSGE centre near to you.

It's truly one of the most diagnosed health conditions.

I have endo and ibs (lactose intolerance)

you can have both and your gastrointestinal symptoms sound pretty bad. My ibs was definitely exacerbated by hormones as it was very impacted by time of the month.

consider doing an exclusion diet and or eating low fodmap (although personally that doesn’t work for me).

colonoscopy would probably be a good idea as well.

buscopan can help with cramps, as can hot baths and hot water bottles.

https://www.bsge.org.uk/centre/category/accredited-centres/

I do feel as though your gastro symptoms on your period are highly suggestive of endo on the bowel.

Thank you everybody for your responses, it’s so reassuring to know I’m not alone 😭 I am going to do another GP consultation in the morning. Something truly isn’t right. My period is almost finished and I’ve just weighed myself - 6kg lighter than 4 days ago. I’m barely eating, as everything hurts. I just feel like nobody is taking me seriously and it’s so upsetting. Tomorrow I will push for a gastro referral and a gynaecologist referral too!

my plan for this week is to cut out carbs and dairy to see if I have any difference. It’s such a minefield isn’t it? 😭 have any of you cut out anything in your diet which has helped symptoms?

Yes give us an update after the appointment, I'd also push to try all the medication I recommended above and also the scans (you may not be able to get the gastro and gynae referral before a few scans, ultrasounds etc and some of the stool and blood tests). If those tests, scans and procedures come back for a few different things they'll likely do it after that. Especially as one of your previous ultrasound was negative for anything. So it might be better to the tests and everything and then try the medication first.

Personally, nothing I've cut out or tried has done anything for me. But if you want to try, you can.

Okay, that’s what I’ll do. I’m so desperate now. I’m exhausted every single day and it’s affecting every aspect of my life 😭 I’m miserable and it’s so upsetting.

I was the 4 and not one scan showed anything, so I went straight ahead with wide excision surgery.

OP I’m not sure your symptoms sound like endometriosis but I’ll keep reading the thread and come back with help if I can.

For me food wise low histamine is key and taking an antihistamine daily reduced my symptoms. That helped with bloating, and I stopped eating tomatoes as they were flaring up my bladder.

@reversegear ive been doing lots of research into a low histamine diet! I think I’m going to start. I’ve noticed since my symptoms have been playing up the last 3 months, I wake up with a scratchy throat and stuffy/runny nose too - definitely think they’re all related. It’s so tough isn’t it 😭

I also think my issues could be being caused by a histamine intolerance. Will the GP just laugh in my face if I bring this up? 😭