Options for endometrioma pain during pandemic!

[Boxclever1]

I had a large endometrioma removed from left ovary end of January. Recovered well but over last couple of weeks have had mild but constant pain in that ovary, with episodes of nausea/shaking/shock-like symptoms at night.

Went for a private scan yesterday and the endometrioma has grown back and is currently 2 cm.

With all that is going on coronavirus wise, I don't think I'll be able to speak to a consultant, and I am assuming any repeat surgery is out of the question for the forseeable. So I was wondering if I could pick your brains on self help for the duration - my GP, who I have been having phone consultations with, has very little advice to give.

What pain relief is available for endometriomas if paracetamol/ibuprofen (which is currently working) isn't strong enough? NB. I'm fortunate that i have no other signs nor symptoms of endometriosis elsewhere.

Is there any hormonal treatments (e.g. contraceptive pill) that would stop the pain or stop the endometrioma growing?

Thanks so much for any insights!

[Missy100]

Boxclever1,

I feel so bad for you! Ibuprofen doesn't touch my pain and I can't take paracetamol (I have an adverse reaction and it wouldn't touch it anyways). For pain I take a combination of Mefenamic Acid (which can also used for bleeding issues) and Tramadol. I am guessing you are not prescribed any strong pain medication and that it hasn't been an option with your consultant or family doctor at the moment.

If you speak to the pharmacist you can get Paramol which is a combination of paracetamol and dihydrocodeine. Check with them that it is a good choice for you. It may help to provide more relief than the paracetamol on its own.

Heat is always a huge help for me. My preference is linseed microwave heat bags but you can try any type microwave heat bags, hot water bottle, or if these are not options for you there are stick on heat patches that can be bought online, at a pharmacy or many grocery stores (if you can find them in the current climate).

I know (trust me I know!) it isn't a magical heal all but I have found that gentle stretching like bedtime yoga can sometimes help me to relax which can help some (chronic pain causes us to tense up more than we realise and while it isn't going to fix the reason for your core pain it can help with the added tension in the rest of your body which is draining and can help us to better cope the pain).

You may have some success with a tens machine. Local drug stores tend to carry them in the UK at inexpensive prices and I use to buy the replacement pads in bulk online. You can start out at a low setting and then work your way up.

I wish you luck in finding something that helps ease your suffering.

[Teacher81]

I’m so sorry that it’s grown back. That’s my fear, I had my 9cm cyst removed from my right ovary last Monday.

Missy100 is right with her suggestions.

I got by using a heating pad/hot water bottle when I was in pain. Probiotics helped with my digestive system and yoga and deep breathing was great too.

You can ask for over the counter ibuprofen/paracetamol with codeine. It does make you drowsy if you’re not used to it and you can’t take it for more than 3 days at a time.

All the best with getting your appointments and help with your endo.

Nisha

[MMich15]

Hi Boxclever1

Sorry to hear you’re suffering, especially so soon after your surgery. Unfortunately happens often with endometriosis.

For stronger pain medication I was prescribed co-codamol, but now you can buy it over the counter in some places. A few cautions - it is quite a strong pain killer in that it isn’t advised to be used for more than 3 days at a time. You can take 2 at a time, I only need half a tablet a time so my advise is to use it cautiously, monitor how effective it is and only increase dosage if you actually need to. Also I find I don’t need it for more than the first 2-3 days max anyway.

Second caution - it can cause diarrhoea or constipation. More commonly constipation. This is a blessing for me as my endometriosis has spread to my bowels.

In terms of stopping your cyst from growing - I have to say some sort of treatment is essential especially as yours seems an aggressive form, with a new cyst only 3 months after surgery. This happened to me after I had a cyst removed in February, I was on the combined pill for 6 months but could tell it wasn’t working particularly well because my periods were bad, had a scan and 2 new cysts had grown. My gynaecologist said the most effective treatment would be Decapeptyl injections (they basically shut down your ovaries and they were very effective for me before but have serious side effects so can’t be on them for more than 6-9 months really). That stopped the growth but I couldn’t stay on the injections for too long.

Since then I’ve been seeing a bio-identical specialist privately to try and recreate the Decapeptyl treatment but less harshly. I’m on progesterone cream, as well as dim-evail and calcium d-glucarate supplements. The supplements flush out “bad” oestrogen and encourage good oestrogen - you don’t need a prescription for the supplements but would need one for the cream. I’ve been on the treatment for 2 months and latest scan showed the cysts haven’t grown so it’s promising so far.

Hope that’s somewhat helpful, that your pain subsides and that cyst doesn’t grow! Take good care of yourself.