Possible Endometriosis?

[ZM1980]

Hi all, first post here. have been struggling with a lot of ongoing, chronic bowel, bladder and pelvic symptoms for many years, which have worsened recently after going through a particularly stressful time.

My periods have usually been on the heavier side, but would always last around 7 - 8 days on average - then back in 2016, I was referred to Gynecology for painful periods, heavier bleeding, where they referred me for an MRI scan (as a low lying fibroid was seen on a previous ultrasound). The MRI was clear and the fibroid of no concern. I did mention possible endometriosis, given my other symptoms, but was dismissed and prescribed the POP (which I didn't take, as I had concerns over the side effects).

Things seemed to subside a bit after a while, but then in 2019, I suddenly started having irregular, very painful periods, which would last for over 3 weeks. I would get severe cramping, almost stabbing pains, mainly located to the lower left abdominal /pelvic region, diarrhoea, burning and stinging sensation in the bladder (without urinary tract infection). I contacted my GP, who prescribed Tranexamic acid (which didn't help much), so I was referred to Gynae (this time at a different hospital). Once again, I mentioned endometriosis, but was dismissed (again).

After a few months, again my symptoms seemed to subside, but in the past few months, things have exacerbated, in terms of the bowel and bladder issues. My periods are lasting for about 7 days, but they are heavier than usual, more painful and I'm finding the lower left bowel symptoms quite difficult to deal with - every morning I have a bloated, full feeling, nausea (I can't drink much water and have gone off certain foods, am bloated after everything I eat and get a burning sensation in lower left region after food).

I have been referred to Gynae again, but for the fibroid. I will be discussing my other ongoing symptoms too, but need to get them to take my concerns seriously. It's strange, as my periods had been a lot less painful and much lighter, prior to this flare up -almost what I'd deem as 'normal'. I have also lost weight (intentionally). Any advice on what to say, what to ask for etc would be much appreciated.

[Loopylulu27]

Hi, really sorry to hear you are going through this!

The important thing to remember is that the way you feel is valid, the pain you are in is valid and do not let anyone tell you this is just in your head or its 'normal'. You know your body better than anyone.

If there is one thing I have learnt is that everyone has different symptoms and people respond differently to treatments. GPs are not the experts here and you will have to push to get referred. If going private is an option for you then I 100% recommend this. (I struggled for years and gp kept writing me off, had my first consultation last week an op booked for two weeks later).

Do some research if you haven't already and raise with the gp why you believe it's endo. You will want to ask for it to be diagnosed otherwise they will bounce you from medication to medication. The only way to diagnose is via surgery.

[ZM1980 in reply to Loopylulu27]

Hi, thanks for your reply. I had considered going private a few years ago after being dismissed by the consultant, but then (as usually seems to be the case), my symptoms sort of subsided and other nagging health issues became top of my concerns! However, I'm thinking about it again - if I don't get anywhere with Gynae this time around. The hospital I was referred to in 2019 is apparently BGSE accredited - so I was surprised that my concerns weren't taken into consideration.

It is really frustrating when GPs/medical professionals refuse to listen you, especially when you know there is something not quite right with your body.

Glad you found the help you needed via the Private route. Good luck with your op, hope all goes well!

[Kricam78]

From my experience, all of the symptoms you describe could be endo related.

I have endo and experience the bowel issues you describe, but the issues are caused by the adhesions left by endo rather than active endo (my left ovary was stuck to my bowel and pelvis and am awaiting more surgery because of adhesions further up in the bowel which have caused a narrowing).

I'm always surprised at how different our journeys toward diagnosis can be because I only had one ultrasound and pelvic exam before I was marked as suspected endometriosis and adenomyosis when my only symptom was slight pain over my left ovary (which I only bothered to have checked out to discount cancer).

Have you had a transvaginal ultrasound and pelvic exam?

[ZM1980 in reply to Kricam78]

Thanks for your reply and sorry you've had to go through all of this.

I did have a pelvic exam when I saw Gynae and the consultant said she could feel the fibroid (but nothing else) - then again, at that time, my symptoms weren't as bad as they are now. I've had a few ultrasounds over the years - sometimes I had ovarian cysts (which disappeared without any intervention) and last one revealed that the fibroid was quite near the bladder (so was referred recently to Gynae again). Had an MRI in 2016, which only showed the fibroid.

Do you get a burning sensation (lower abdomen/pelvic region) after food? I seem to get this a lot and feels like it's localised to the lower left abdomen, then radiates to pelvic area. It feels like there's 'something there' (hurts when I put pressure on it, certain movements).

I'm also under investigation for GI issues (chronic reflux, nausea, fullness etc) - but I'm aware gynae/bowel issues can cause these symptoms.

It's good you had a suspected diagnosis after one ultrasound. Has the surgery helped with the symptoms?

[Kricam78 in reply to ZM1980]

Hi ZM,

I didn't get a burning sensation on eating but did get a feeling of fullness, heartburn and indigestion. I'd also experienced constipation/diarrhoea and when I used to get a period I had bleeding from my backside. But like you I also had the feeling of there being something 'there' in my lower left abdomen and understand now this was from the ovary which was 'buried' by adhesions and stuck to bowel and pelvis. This also gave me radiating pain into my back, pelvis and leg. It moved on to discomfort and pain up my left side and under my ribs.

My recent surgery discovered my bowel is stuck to itself and narrowed in one place by adhesions so I need further surgery as the gynae didn't have my consent to deal with it at the time (he had consulted a bowel surgeon while I was on the table who I've now been referred to).

I certainly felt better after my laporoscopy in terms of pelvis pain as they ablated the endo. But my pain associated with the adhesions got worse so I had the laporotomy 10 days ago where my ovary was removed and some adhesions divided. It'll be a little bit of time yet before I know if it's improved things but I'm hopeful.

I would be very direct with your gynae when you next go and ask for exactly what you want. I think they can downplay things and err on the side of caution when it comes to treatment. My gynae is good but if I were to have taken his direction then I'd simply be on more meds now and I know meds would never have sorted the adhesions I had so I pushed for surgery. At the end of the day, you know your body better than anyone, and you're research will likely have given you an idea of what you need/want to be bold and ask for it.

[ZM1980 in reply to Kricam78]

Hi Kricam78, thanks for sharing - sounds like a lot to have to go through. I too get diarrhoea with periods and a sort of niggling pain in the lower left side, along with the bloating, fullness etc. But also have constant, ongoing lower left digestive issues, so not sure if this is possible endo/other bowel issues or both.

I'm glad the surgeries you've had have helped relieve some of your symptoms. When I first heard of endometriosis, I wasn't aware that it could cause such complex issues and unusual symptoms, but on research and from reading other's experiences, you can see how a lot of things add up.

I will definitely be more direct with the consultant this time. I have asked for tests/scans in the past (blood tests, ultrasounds - mainly from my GP), but somehow dealing with consultants is a bit more testing! Like you say, they do tend to downplay things when it comes to treatments, so will just have to ask. Good on you for persisting with things and pushing for surgery - sounds like it definitely paid off! Good luck with your upcoming surgery

[BloomingMarvellous]

They do a great symptom diary on the website here. It’s probably really useful to use it and then supply copies at your consultations and underline the length of time this has been going on and your concern around endometriosis hasn’t been properly investigated. I would insist that this is now really explored rather than being dismissed each time. Ask for a referral to your local properly qualified endo specialist. Emphasising the benefit of them also knowing and able to provide effective treatment is usually attractive for a consultant whose got a returning patient without proper answers.

[ZM1980 in reply to BloomingMarvellous]

Thanks BloomingMarvellous, will look into this. I kept a record of my periods back in 2019 (duration, symptoms) and brought it with my to the appointment - the consultant just quickly looked it over and handed it back to me. I didn't feel like it was a proper, thorough consultation, which is frustrating, as I usually try to prepare beforehand what I'm going to say. Will do more research and try to be further prepared for the next appointment, but know I have to be more persistent with them!

I have been referred to general Gynecology, so I guess if they still refuse to take my concerns seriously, I can ask if there are any consultants who specialise in endometriosis

[BloomingMarvellous]

They can be pretty dense sometimes. I’d make a copy of the record to leave with them for their notes. I’ve found if I have a tough looking male presence in tow ensuring they respond appropriately it’s often shifted things where I can’t even though the dialogue is more or less similar ! Shouldn’t be that way but frankly I’ll take any wins I can. Good luck x

[ZM1980 in reply to BloomingMarvellous]

Good idea, will bring copies of any relevant information/documents to any future appointments.I've often thought it would have helped move things along if I had someone with me at my appointments, but don't always have the option. You're right, it shouldn't have to be that way, though! But if it helps, no harm in having support.

Thank you. x

[BloomingMarvellous]

Hope it goes better hereon in.

[nieldy]

Hi, My mom exactly had the same symptoms, She have myoma for almost 12 years already and she never had pain when having periods not until 2020 happened. She experienced severe pain when she had her period. It was painful that she cried for help, later after going to gyne she was told she had PCOS and her myoma was already multiple, she also had thick endometrium that explains her spotting and heavy periods than usual, she had trans V and pap smear and glad that It came back negative for any possible C. after months of diet her PCOS was gone Thankfully, she never had that painful period again, and just this July when we went for a trip she had her period after months of not having it (she thought she already hit menopause because she’s already 47 and didn’t had periods for months) It was really scary time for me because she cried and asked for help but thankfully after taking paracetamol and a heat compress it went away, and just this august she had her period, Thankfully she didn’t have any pain again. She also have a lot going on in her bodies just like you. I understand how worried you are, Know that you are not alone and I hope you are okay.

[ZM1980 in reply to nieldy]

Hi nieldy, I'm so sorry to hear of your mum's struggles, but glad she managed to cure her PCOS and that the painful periods have resolved. Did she have the myomas removed? I have one Fibroid, but it has grown and my bladder can't fill up properly, as the fibroid is in the way, so will probably have it removed. Last period was painful and the bowel issues flared up too.

I'm not sure what is causing the bowel/Gastro issues, but will be having colonoscopy and upper endoscopy to rule other causes out (not looking forward to it!). Thank you for your support and hope all continues to go well for your mum.

[nieldy in reply to ZM1980]

She still have fibroids or myomas up until now, How old are you? You have the same issues with my mom, Bowel/Gastro issues, Just this week she had problem breathing because of her acid reflux 😭 thankfully she’s okay now after taking meds. If you don’t mind me asking may you elaborate your concern with your bowel? Are you having issues with passing stools?

[ZM1980 in reply to nieldy]

I'm in my early 40s, but have had these symptoms for about 5 - 6 years (the bowel issues) - before that, I had problems with heavy, painful periods, on and off. The bowel/digestive issues always flare up just before and during periods - I get an unpleasant 'sore' feeling in lower abdomen, bloating/fullness, diarrhoea during period.

I also have ongoing symptoms - lower left pelvic/bladder 'burning' sensation at times and constipation type symptoms at the moment. When I pass stools, it feels like incomplete evacuation, even when I have diarrhoea.

I struggle with Acid Reflux a lot too, it's awful and has caused me breathing problems in the past - sorry to hear your mum struggled with it, it can cause a lot of unexpected issues. Glad she found the medication helped. Is she taking Omeprazole/Lansoprazole?