where do I go from here…

[NatAlex29]

Hi all,

I was diagnosed with stage 4 endometriosis in 2016 and underwent excision surgery. After surgery I still struggled with pain however went on to try and start a family.

We have been incredibly fortunate and have 3 children (this wasn’t without loss). My periods always returned very quickly after birth despite breastfeeding however I started noticing symptoms return after our second which then became unmanageable after our 3rd.

My usual uti problems started initially, then came the pain which left me on the floor vomiting every time I was due on. I sought help again and asked to be referred to an endo specialist centre - only to be seen 13 months later and not placed on the endometriosis clinic… I was told I had to try the coil initially and then look at Gnrh injections which I really don’t want to go down the route of having due to the side effects and osteoporosis running in my family.

I had the coil fitted with the agreement I would be followed up 6-8 months after insertion. I started off bleeding pretty much all the time, this then led to spotting. Before Christmas I missed a period and thought it might have eventually started to settle in - I was wrong.

This months I’ve had nausea and sometimes vomiting pretty much every day. I’ve started having issues again with my bowel, which to be honest started a while ago but have got worse (either diarrhoea or constipation). I’ve ended up with haemorrhoids and bleeding (new and old blood). I’ve tried really hard not to take any pain relief however I’m really starting to struggle - the Gp is testing all other bowel related issues out before looking to write to consultant to look into it.

this week I’ve had to not work basically due to the pain and I’ve messaged the doctors this morning around pain who just got back to state I’ll receive a call on the 20th February when all my results should be present.

I’m just wondering if anyone has any advice, has been through anything similar as to be honest. I’m not sure if it’s my endometriosis again but I had a large golf ball of tissue removed from my bowel previously so it’s not unlikely…

Just didn’t expect to have to fight again to be honest and I’m feeling worn out.

[PINKSHRIMP456]

Oh I'm so sorry this is awful to hear. My symptoms are nowhere near as bad as yours. I have had sickness because of the pain but not to the extent of what you have. I have irritable bowel syndrome so I know how bad it can be, I've got haemorrhoids and suffer from diarrhoea and constipation which is worse before and when I'm on my period. The non period bleeding is pretty scary. We all seem to live with these symptom that are definitely not normal.

Are you able to see a private health care specialist?

Have you tried acupuncture? Many acupuncturists specialise in women's health. I've had it done many times before for many a different illness and it does help, it's a nice, relaxing experience and if you tell them exactly what you are going through they are very good at trying to help you.

I also find that cutting out dairy can help reduce my period pain, it may be worthwhile seeing what food you are intolerant too.

Many people like to go swimming or do exercise to reduce period pain but I've never felt like I wanted too or had the energy to do this. I usually just want to sleep.

Have they tested your iron levels? This can have a large impact on the way you feel on your period, you may need iron supplements but be careful because they can cause stomach upsets.

My doctor has just recommended that I take naproxen for pain relief, I'm not sure if you've had this before but if you don't want to rely heavily on medication, acupuncture may be an alternative for you..

I once had two hot toddys before bed and they knocked me out for ten hours, it was the best sleep I've ever had, and the pain just disappeared, but I suppose we can't do this everyday either.

Best wishes ❤️

[NatAlex29 in reply to PINKSHRIMP456]

Hi Pinkshrimp456,

Sorry to hear you experience similar symptoms.

Unfortunately I had my surgery privately and my private healthcare does not cover long term care - just diagnosis. Having my little ones meant I was not placed on any form of waiting list either.

All blood work level appear normal apparently so not much to go on from bloods - I’m still awaiting some bloods and a stool test but to be honest the effects of endo on my bowel was previously put down to IBS so I’m thinking it’s likely it’s just flaring up?!

Thank you - will see if they can look to prescribe anything as at the moment I’m not coping very well.

Thank you so much for getting back to me!

[PINKSHRIMP456 in reply to NatAlex29]

Thank you ❤️Unfortunately it seems IBS and endometriosis work together in harmony to cause chaos with our bodies. I am sorry that you are not coping well, it's so hard to tell people that you have bad periods or period pain etc because to those who don't suffer from it they don't know how bad it can actually be. My friend has it so bad she's had six laparoscopic surgeries and misses so much work. It is a disease and needs to be more widely recognised, unfortunately saying period pain isn't usually accepted to be enough of a issue for sick leave but it can impact so many things.

Alternative medicines and therapies can really help or at least relieve the pain so please have a research of them.

Big hugs to you

[Lindle]

was your excision in an endo centre back in 2016?

[NatAlex29 in reply to Lindle]

No - I was initially seen for bladder issues and had a number of procedures. The MRI whilst under going this tx highlighted a thickening of the pelvic ligament and from this I was referred internally to gynae (private healthcare).

The consultant who operated is a well known specialist - initially the thought was to diagnose and remove however the extent of my endometriosis was stage 4 so required further surgery. At this stage I had no idea about endo centres etc.

I asked to be referred to an endo centre for my care this time but they placed me on a general gynae clinic.

[Lindle in reply to NatAlex29]

Which UK country are you in?

[NatAlex29 in reply to Lindle]

I’m based in Cheshire