symptoms

I have so many various symptoms I am finding the doctors unhelpful. For over 12 years I have been in and out, IBS, age, hormone tests, internal scans etc etc until after many years, finally a laparoscopy, even the consultant said I doubt I will find anything! He did-adhesions removed, distended bowel observed and a quick chat around go next to bladder and bowel! As this is becoming an issue also. That was nearly 3 years ago now and still face this wall and obsession with the coil-which I have reservations around. They observed a fibroid the last scan I had which is new. The advise was to listen to podcasts for my mental health. I take care of myself well and my diet/exercise are good. Although I food avoid due to such bloating all the time, it’s sore and pulls my ribs and makes me feel quite unwell when I eat too much.

I am getting leg and hip pain and the pull in my left Ovary area is horrid, not just the long period time now it’s most of the time. I am awaiting another doctor appointment as I feel blocked up my bottom all the time and I can feel a lump on my pelvic bone.

I was hoping someone could tell me their lived experience as it’s quite lonely I find and most people just thinks it’s bad periods and part of being a woman I find.

[Cailleach]

Hi, sorry you have had such a difficult time.

We’re they saying your bladder and bowel are affected by the endo? If so you need to be referred to a specialist endo centre and not to general Gynae. Speak to your GP about that to make sure you are being referred to the right place, some of them are not very well informed about this.

It does sound from what you are saying that your endo has progressed and should be investigated further. Are you getting effective pain relief from your GP? You are likely to be on a waiting list for some time. There are a lot of options that GPs can prescribe.

Personally I couldn’t get on with the coil, but I had a bit of a struggle to get them to take it out again! If you read up on here it works well for many people and is awful for quite a few others. It can help with symptoms, it does not stop endo progressing. It is of course your right not to have it if you don’t want it.

I have endo on my bowel, I find the main issue is if I am constipated when it gets very painful, I take senna if it gets to that stage, but generally I can manage my diet so it doesn’t happen, but I also have some discomfort just when moving my bowels.

I think endo is becoming more widely known about and people are a bit more aware due to women in the public eye saying they have it. It is hard when people around you don’t understand though. Personally I think that if you can find one or two people close to you that you can talk to, who ‘ get it’, it helps so much. You might have to educate them gently first. There is information online, including from Endometriosis UK which helps. Unfortunately a lot of GPs and even general Gynaes are not that well informed either.

There are quite a few books available, aimed at people with endo, which can help with advice on non-medical ways of helping yourself. You sound as if you are pretty good at looking after yourself.

The books I have are Heal Endo by Katie Edmonds, and Endometriosis Healing from the Inside Out by Carolyn Levett. Both cover nutrition which you might find helpful. If you look on Amazon you can find them and quite a few others.

Hope this helps xx