To demand a treatment plan to solve this issue?

[itsgettingweird]

So back end of last year I started getting really constipated.

I’d started verapamil as I suffer cluster headaches and constipation is a known side effect so assumed not was that.

GP prescribed me macro gel and I was told if it didn’t resolve I must go back.

it improved with the meds and then the cluster headaches broke and I started to reduce the verapamil but the constipation returned and was only managed through taking lactulose.

So I did another e consult and asked for more macro gel and stated the constipation hadn’t resolved and sink was going back as directed.

Basically told to buy laxitives and treat myself OTC. I did another e consult questioning this as I’d been told to do back to have a message saying they stand by their advice and to make a complaint if I want happy.

A few months passed and I was constantly taking laxitives and heartburn meds and having a lot of bloating and pain.

dod another e consult as the heartburn got unmanageable and after 16 days (despite being told they’d respond in 14 I’d heard nothing)

I decided to investigate my stomach and began to press down on it and noted the left hand side has a hard mass about the size of a tennis ball so did another e consult.

This one got me an appointment F2F that morning and a prescription for macro gel, fit test and blood tests.

Fit test and infection check via stool was clear.

Blood tests tomorrow.

They are checking my CA125 amongst other things.

Id like advice on what people would do next, ask for next if the bloods come back clear?

I’ve been in the macrogel for 2 weeks now and the lump isn’t clearing and although my stool is soft it’s clear it isn’t all getting through.

I don’t want to be fobbed off with “it isn’t cancer” and let to suffer when it’s “something” and I’d like to know what that is and have it treated rather than managed.

So AIBU to push for tests if the bloods don’t reveal anything?

.

Could the lump be compacted stools? What’s your diet and water intake like as that contributes to constipation.
If the blood tests come back clear then I would think there are no cancer markers?

yes. If the blood tests come back clear and there’s no cancer markers I’m afraid they’ll just keep saying take laxatives which - in my (non!) medical opinion aren’t working as it’s a build up of stool. I think we need to investigate why?

Mh diet is good. Walk 5k 3-4 times a week and go to the gym 3-4 times a week. Regularly walk 15-20k steps a day and drink at least 3lt of water a day with other drinks on top of that.

So I’m not sedentary with a poor diet. Plus I’ve been taking laxatives for so long as I keep getting bottled up and they aren’t solving the issue.

im worried the “it’s not cancer” will end their input.

(Im also terrified its cancer as my mum died of stomach cancer)

You sound otherwise very healthy. Is it possible the constipation is still a hangover from the headache meds? As you didn't have it before.

Could you undergo a disimpaction protocol with Movicol or similar? It's not clear from your post the dose you are taking. But disimpaction should be done under medical supervision. It might clear the lump if that's what you think it is.

What are your stress levels / mental health like?

Have they tested your thyroid?

I am pleased this is being investigated and you don’t have cancer markers. My friend had a lump like you described and it was an enormous ovarian cyst. (You could see it when she was lying down.) Keep pushing until you find out what it is.

Is it definitely bowel? Could the lump you can feel be a fibroid or ovarian cyst or similar? If you are getting bloating id expect a gynae scan.

My husband suffers with cluster headaches they are very debilitating so you have my sympathy. He was also prescribed verapamil which unfortunately didn’t help him at all and caused him problems with constipation.
it took us nearly four years of trying different remedies for the headaches and after seeing a brilliant neurologist she prescribed oxygen to relieve the pain of the headaches.
The oxygen ( he has a large tank and a portable one and it is checked every so often for storage safety) was a godsend it relieved the pain more or less immediately.
So apart from the relief of the headaches he wasn’t taking any drugs that was giving him horrible side effects
wishing you well

I’m not entirely clear of no cancer markers yet - blood test is Monday.

if it comes back clear I’m planning what I do/ask next as I do believe this has happened as they refused to treat me properly initially despite telling me to contact them if it didn’t resolve.

im on sterol which is a macrogel. I was told initially to take 1 sachet twice a day but increase if needed.

I’ve taken 4 this morning and just made a drink with another 3.

blood test will check my thyroid too.

As for ovarian cyst - possibly but it doesn’t feel like it’s in the position my ovary would be in iyswim?

Mindyou they aren’t attached to anything so I guess one could have migrated 🤣🤷‍♀️

Thank was referred oxygen as I suffered the chronic type so would get woken up 3/4 nights a week. The sumatriptan injections worked to stop them and stop the longer term side effects of the headache and eye pain.

I went up to 980mg of verapamil which did then break them - I’m 60 days of remission today - happy cluster headache free birthday to me!

im now on 400mg a day and gently decreasing every 2 weeks by 80mg a day but the constipation has got worse.

Tbh I’m fed up now!

Sorry, no helpful advice re pain & other symptoms.

but lots of empathy, it's SO difficult getting things sorted out 🌷

🤞🏼it's not cancer 🤗 but keep pushing fir other tests & investigations into what US causing it. Xx

Just as a side to make you smile (possibly) I was in class Monday & Tuesday and one of the children said she was constipated (not quite her words but I won’t give you the full gory details!) and in a bit of pain. I saw her on Wednesday at lunchtime and she gleefully announced at full volume “my poo moved”! We did a happy dance in the school hall!

🤣🤣 This did make me laugh. I’m head of pastoral in a school and the kids love to overshare with me!!!

It actually makes you feel like your doing a good job when they feel comfortable enough to explain the literal ins and outs of their lives 🫣

God the over sharing! Parents would be horrified if they knew everything their kids told us!! 😱🤣
I only see them 2 afternoons a week so I was really touched she chose to share the information with me! Not so much the graphic poo details but if it was important to her it was important to me!

How is the indigestion now? One thing they can check is for H-pylori- either via a breath test or stool sample. I don't think it can cause constipation, but I tested positive after having years of heartburn. It might be another thing to look into.

For the constipation, do you use a squatty potty? Anything to raise our feet up can make a massive difference and makes it SO much easier. Bricks/large tins or steps etc.

Yes h pylori was one of the things the stool test ruled out.

and yes I raise my feet.

I mentioned the ovarian cyst before… ovaries have form for not being where they should be, and though some cysts are bloody enormous, ovaries themselves are about the size of your thumbnail. Changes in bowel function should can also be symptomatic of ovarian/uterine cancers/cysts and this should be investigated also.

I agree with this.

Can you ask for a gynae scan?

Disimpaction protocol sounds like a good shout.