Stage 4 endo no where to turn to

[Isaiah4110]

For sure thanx to this grp, no one with out endo can understand that some one old enough above 40 can say they hav lower abdominal pain everyday to the point of crying en scrimming for a mophine injection en the nurses say can we start with naproxine or ibuprofen en u scream telling them those wont help coz the pain is too much en they just dont get it. It can be so frustrating. Personally i hav severe endo of stage 4 , my ovaries hav cysts thst keep expanding every month en they are now attached to the uterous , my bowel too moved out of position, i live in pain severe pain each en everyday.

Currently using diclofenac suppositries twice a day with co-dydramol 4 times s day en still stay in pain. My whole lower abdomen feels so so sore like i hav a very big fresh wound in there. Already had two open suggeries en doctors dont want to do a 3rd one. Am so so so stressed 😫 😩 🙃 😪 out , dont even know where to turn to.

Any advises plz plz.

[Ssgrlp28]

Hi I’m stage one endometriosis, please try the ovira period pain relief. People with endometriosis use it and say it’s the only thing that helps , I’m only stage one but the pains are horrendous. I’m only 20 and I get very upset thinking it’s just going to get worse. Maybe even try to use legalized marijuana you can get a card for having endometriosis and they can pick which will help out best with pain. Wish you the best, also you can file for disability

[Noodle1984]

The biggest thing with all of this is to try and not get overwhelmed. I have 18 chronic illnesses, including Endo (stage 4 recto vaginal), adenomyosis, and fibroids. It’s easy to fall into a spiral of sadness and pain. You can’t control what life throws at you, but you can control how you respond to it. I was in a car accident 6 years ago next week and at 30 I was told there was nothing more they could do but perhaps find a stronger opioid.

So I said enough was enough. My husband did a ton of research and found a private specialist. I haven’t looked back since. The level of care I receive from him versus my regular gp is night and day. I live in Canada and our medical system is no better. I have spent hours on eye homework and exercises, disgusting supplements, I take 38 pills/supplements a day. You have to keep pushing to find what works for you and your body. What I have learned is that you are the only one who can say when something isn’t right in your body. It takes a lot of work but you can feel better. Start with some small changes. Here are a few things that I recommend as a starting point.

Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.

2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing!), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.

3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.

4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.

As well, was your previous surgeries done by general gyn or Endo specialists? And was it ablation or excision?

[Isaiah4110 in reply to Noodle1984]

Thank you so much noodle 1984, hav read ur writtings over en over, for sure like u said its us who understand our bodies best. I havnt bn so gd at following diet to be honest but i guess i hav to now be very strict en follow diet. Gluten free foods are not easy to keep up to as most eats hav gluten in them. Plz list for me like 50% of wat u eat en i try to adjust my diet.

The white gluten free rice is it okay or it has be brown? The only juice i resorted to is apple juice but it tastes so sweet some times like there is sugar in it, en i get confused. Is chicken liver okay to eat too. Plz dont laugh at me hbt the tinned makerel fish , is it also considered processed food? Also wat exact supplements do u take?

Unfortunately currently i cant afford private treatment en am stuck to the government one

😔😔.With the cconut en almond milks, my mind always thinks they add in alittle of diary mik for quantity amounts 🤓. May be am wrong here.

Will definately start on the magnesium supplement en sadly work on diet change. I enjoy red meat en always the consquences are immediate.

I dont fuly understand exicision en ablation procedures but i had two open sugeries. I will also get a heating pad.

Am really sorry abt wat ur going thru, 16 chronic illness is such a tough road to travel but may the lord see you thru my dear.

😍😍

[Missy100]

I feel for you. You are heard and your pain is real. You also deserve better help.

I know these will not eliminate your pain, but they can help a bit in the meantime, and imho any help is better than none when it comes to being in agony:

-microwave heat bags. I have several. And yes I sumetimes use them all as once (loxer back, pelvis, hips, legs, lower tummy...). I get mine off Etsy from a woman who offers flaxseed bags, will do custom orders, and offers a variety of styles. My favourite are the ones that are sewn into strips so the contents stay evenly distributed.

- tens machine. The one I have is from Lloyds pharmacy and has the option to use two double leads with it, so I can have pads in four places at once. Playbaround with them. Even moving them slightly to the left/right/up//down can be the difference from making it feel worse to making it feel better. I buy replacement pads in bulk off Amazon. Some brands are better than others and as a result I always buy the same brand now ( Healthcare World).

- If you have the energy hot baths and/or showers can help. If you take baths try adding baking soda to the water. About three heaping tablespoons if you are using enough water for a proper soak.

- gentle stretching, when you can manage it. You will need to listen to you body for what works for you. If you want something guided try a free yoga video for relaxation yoga. If you've never done it before, remember that the people teaching the classes have probably been doing it for years. No one starts out being super flexible .

When I just need to escape I find putting soothing music on and putting my headphones in in a dark room and proping myself up in whatever position works best for me can sometimes help a little bit.

As for pain medication. Make an appointment with your GP. Discuss your diagnosis, that due to Covid you can't get further treatment and that you are in excrutiating pain. Tell them what you have tried that doesn't work. Tell them what pain you experience, how bad it is on a scale of 1-10, where it is and how often you experience. Explain to them how debilitating it is. You need to show them that you have tried everything else before arriving at this point.

I've never heard of morphine being prescribed for Endo. That isn't to say it isn't, just that I've personally not heard of it. The medication I take (that he'll with pain) are Mefenamic Acid and Tramadol. My GP prescribes it. I was started in the Mefenamic Acid first and the Tramadol was prescribed when the Mefenamic acid wasn't touching it. When I have reviews I have to go through all the above details. It shows you are not just seeking out narcotics, but have arrived at this point due to other things not working. It sometimes isn't enough, put when I use the meds and the other things I've outlined about it definitely helps most days.

Sadly not all drs know enough about Endo to realise the amount of pain it truly can cause. If you don't get help from one, be prepared to request a second opinion. A&E often won't be helpful in prescribing or issuing narcotics for Endo, as it is a chronic condition and therefore should be managed between your GP and gynaecologist/endo specialist.

I also find minimising wheat and dairy can have an affect. Cutting it out completely didn't make a huge lasting difference but being conscious of not consuming too much definitely has. If you choose to cut or reduce dairy make sure you are sti getting calcium in your diet in other foods. Depending on your hormones, which have the potential of being out of balance and contributing to your symptoms, you could be at an increased risk of osteoporosis. Vitamin D is important as well, as it aids in the absorption of calcium and you may find a supplement is required (especially with many spending less time outdoors due to Covid).

Being in pain with no way of escaping it is a wretched prison to be locked in. I hope something I've offered is helpful and I wish you the best of luck in finding some relief.