Feeling a little lost and alone...trapped gas and a few questions if anyone can help

[TinyRoo]

Hi everyone,

I don't usually write when I feel this bad. I'm sorry that its a negative post. Just feeling very alone, overwhelmed, mixed up and really down at the moment an what is the point anymore?

I have endometriosis everywhere but only stage 2. When I was first diagnosed with lap in 21 yet all my scans were clear. I started medroxyprogesterone injections in April 22 and then started the HRT in October 22. Since I have had the HRT, I'm in so much more pain, my rectum feels like there is something continuously there, I'm bloating terribly and my gas is so trapped I can feel it swishing about. It affects both ends and Its so painful on top of this daily pain I get. I take it on a night to try and reduce these effects, have tried all the tummy remedies available and peppermint tea but its very resistant and the gas is 24/7. Does anyone else get this much trapped wind? does anyone suggest anything for it? I'm not vaginally bleeding though but can feel the cycle still occurring when I would be naturally due. Does that sounds stupid? My teeth are wearing at an accelerated rate and I don't know if its the medicine causing bone weakness. Not had a bone scan yet...

Does anyone else get these symptoms? I feel like the HRT has made it so much worse and my appointments for me to be reviewed keep getting pushed back. My GP always say its too specialist so they only by guidance from specialist.

I guess I just need some virtual comfort.

Thanks

[nanomyous]

Hi TinyRoo

I'm sorry, it's really tough when you're going through a flare/bad patch. Have you tried the Endometriosis UK helpline (hours on the website endometriosis-uk.org/helpline, 0808 808 2227)?

I haven't taken HRT so can't comment there. For gas/cramps, if you don't already, lying on a plug-in heat pad often helps. Also, deep breathing again lying down. I use the free app Paced Breathing and 20 minutes seems to relax everything (I do 10 seconds inhale, 10 exhale - you can vary this to what's comfortable for you).

Take care.

[TinyRoo in reply to nanomyous]

Hello,

Thanks for reading my post and getting in touch with your helpful guidance and support. It's made feel bit better there is help and support there. I haven't tried the helpline but will try look into it. Really helpful thank you

Thanks again

[Purple_Badgers]

Hey xxx No apologies needed - even the strongest endo-warriors need a break from the battle sometimes - that’s when you’re overwhelmed, exhausted and can’t keep up the pretence that everything is fine - that’s when you need to pause, vent and let your buddies bear some of the burden! xxx

With regards to your teeth- I guess it could be related to bone density loss and this should definitely be monitored. Another possibility came to mind - if you’re suffering a lot of stress and anxiety, could you be grinding your teeth without realising? (A lot of this is done at night, but also can happen during the day, particularly if you’re holding a lot of tension in your jaw.) From experience.

As for the gassiness- I can definitely relate… can be so uncomfortable and my belly can bloat up so it looks like I’ve swallowed a football.

Favourite methods of getting rid of stuck wind: laying flat face down on bed or floor and gently rocking side to side; laying on left side and drawing one or both knees up; laying on back with bent knees and lifting pelvis up; laying on back with knees up as far as you can and gently hugging your knees; kneeling down then relaxing and leaning forward gently as far as poss. Also gently but firmly rubbing round the abdomen, roughly following the track of the large intestine (starting on the left side of your body, up to under ribs, across left to right, down the right hand side) in a repeated almost circular motion. For higher-up wind, I find that standing & stretching tall while massaging the diaphragm area gently helps bring it up.

I also find that making sure I’m not constipated helps, along with drinking plenty and getting out for a walk to keep things moving.

Obviously I have to say I’m not medically trained, so please take care if and when trying any of these and don’t do anything that could exacerbate other health problems!

Good luck with the treatments etc - I’m on Prostap for chemical menopause and Livial for HRT. Hot flushes and poor sleep here…

[TinyRoo in reply to Purple_Badgers]

Hello, thanks for reading this and your support. Means a lot to just have someone to speak to who understands.

With regards to my teeth, might be grinding but I don't wake up with aching jaws or anything like that. Might see If I can get some trays made to wear during the night. Hopefully that will try and rule something out. I do get a lot of deep throbbing ankle/foot pain which I think might be my bone. I really hope I get a scan soon

I will give that a go with the gas tonight as still belching as we speak. I do eat veggies /fibre and drink water but perhaps not enough as I should and my meds are pretty constipating...

I know the flushes are can be really bad for me even with the HRT. I feel for you because my sleep was terrible until I had my dose of amitriptyline increased. Hope your doing okay though. It's really tough. Has the prostrap helped your pain?

[Purple_Badgers in reply to TinyRoo]

No worries! I love that we can share info and feelings, problems and successes on here - if only actual healthcare could learn from it all and look after us a little better…. 🤷‍♀️

Hope you got some gas shifted! I was going to add that you might want to look at which types of fibre you’re getting, as some are so bad for creating wind that you might be better off with less of those and more of others (thinking of the beans/cauliflower/cabbage gang).

Also I remembered that I take probiotic capsules with added fibre, and sometimes take a dose of Andrews liver salts if I need to burp really badly, also helps with constipation overnight. (Read labels - not suitable for everyone!)

Being without periods has definitely been a relief. I started the Prostap injections without HRT, but had constant hot flushes, increased joint pain and deep bone pain in my limbs. Once the HRT tablets kicked in, the hot flushes reduced to manageable levels, sleep improved slightly and the bone pains seem to have gone. It’s a bit of a trade-off, but worth doing and has helped me decide that I will have the hysterectomy on offer rather than waiting for my natural menopause.

[TinyRoo in reply to Purple_Badgers]

I know, I wished they did. It is good that we can share things here.. although wished support groups were in person sometimes.

Thanks, salts have helped a lot. Such a relief to not be blown up as much 😊. Yes, I will have a look at fibre type thanks.

Glad to hear not having periods gives you the relief. I must admit it is nice not to have that bleed but I still feel something weird is going on there at that time.

Have you had many bone scans? When did you have your first one? I'm considering going private to have one asap

Thanks again for sharing 😌