Feeling so fed up!

[LeieH80]

I need to let off some steam ladies. I was diagnosed in Nov 2014 after having a laparoscopy and the endometriosis excised. Since then I feel I've had a turbulent journey. My pain came back quickly so I was put on the combined pill for three months at a time to try to control it more. When I was first diagnosed I was strangely ecstatic. The pain I'd had for years was real, not a figment of my imagination and I finally had some answers. Fast forward 14 months and I feel like I am in a constant battle for control. Some days I win, some days the endometriosis does. The random pains, the familiar pains, aches in my back, the bloating and the most awful fatigue. It's really getting to me at times. My husband has been amazing and sees the state I am in and has been my rock, but I almost feel let down by most of the other people around me. My best friend dismissed me the last time I spoke to her about how low I felt by saying 'well you're on the pill now' and promptly changed the subject, and my mum even told me a fortnight ago that all I really need is a 'positive mental attitude'! Get that girls. Never mind the pills or the surgery, its all in our minds! I just feel right now that I don't think anyone understands just how wearing this is, and I challenge anyone to remain positive when you are curled up in agony.I try my best to be as positive as I can but I'm only human and feel quite helpless and alone at times. Especially when I get different than usual pains, I don't know what's worth worrying about and what isn't anymore!

If anyone has any tips on other things to do alongside the pill please do let me know. I'm not sure at what point I go back to the doctors to ask for another referral but I'm not sure how much longer I can carry on like this for!

Thanks for listening

L xx

[Hidden]

Hi L

Just wanted to offer a big hug. I really don't think anyone who has not had this disease realises just how difficult it is to have a normal life. It's most likely your family and friends expect you to be fixed by now and don't understand why you are still suffering. It's natural for a lot of illness you get treatment and you get better. Endo is a different beast. We get treatment and for some it works for a short time and others get a good spell with diminished pain. One treatment may work for one person but not another. Dealing with the disappointment of pain back quickly is hard, so not only are you in pain it also rocks your axis. I know this because I also suffered endometriosis. My friends and family the same 'why is she not fixed" syndrome. When I fit a down patch like this I took a few days to lick my wounds then started back at the research or looked for something which I hadn't tried to help. I instantly started to feel a bit better as I was actively trying again to find something and this is what you have done by posting. If that is not a testimony to a positive mental attitude I don't know what else is.

I had great succes from the endo diet. Took me a while to get my head around the book. What did help is buying some of the endometriosis diet recipe books. I started out with small changes to my diet and it did help. I had more energy and I had less bowel pain and less bloating.

I also tried some of the supplements they recommended in the book. I built each thing in separately one at a time or one change at a time with my diet. So I could pin point in my food diary what change helped.

I also used aromatherapy oil mixed up by a qualified practitioner who made a blend to help with pain cramping and bloating. I rubbed this on daily or when needed. This also helped a little.

As my energy improved a little I started doing some gentle yoga which helped a little.

Put it all together over a year and I did have some improvement.

Ultimately you will need to go back and get another referral. The fact your symptoms have come back you need to ask to be referred to an experienced surgeon on the list. Do some research on them as the level of experience varies. Do this when you are ready and feel able to cope with another round of referrals.

In the meantime I hope others can come back with things that helped them for more ideas you can look into.

I hope you feel less deflated soon T xx

[Hidden]

Feeling exactly the same as you and getting the same reaction from loved ones. The battle is so hard! All I can recommend is pain killers. Paracetamol doesn't work for me but ibuprofen works a bit better. Still doesn't get rid of the pain when it's at its worst.

I also have the same issue when it comes to different pains and whether they are the endometriosis or something else. I always just end up waiting it out.

Consultants and GP's don't seem to understand the extent of the pain that is felt. It makes it more frustrating. I've been told by all consultants and Drs that they can't help me because I am trying to conceive.. Have been for 4 years. They just tell me to come back when I don't want to try anymore.. When I mentioned to the consultant that did my lap that I've got more pain since, especially around ovulation.. He said 'that's cause your ovulating which is a good sign!' Although it makes so sense cause it makes life harder when trying to conceive!

My acupuncturist has mentioned that scar tissue can form from the laparoscopy, so this could cause pain but operating again may make it worse from what I understand. She's mentioned maybe I should have a lap done again but it's only been a year and I don't want to increase scar tissue, so I'm willing to try anything else.

I am currently trying to eat more to suit endometriosis. I came across some info online that stated what can flare endometriosis up. Red meat, dairy, honey, sugar and grains. It's still early days so can't say if it's working or not. I'm now working on my health in general.. Although I've struggled with exercise cause I've found it flares the endo up.. It's such a tough battle. If you ever want to rant, you're welcome to message me.

[LucieH]

I am sorry you're going through this. People just have no empathy. I too have heard many times "oh she's sick AGAIN" and people often told me that I was too fragile, making things up, or just being too negative. I was told that I should just get healthier life style, especially some years ago when I used to be a bit chubby people just told me I was sick because I didn't exercise and ate too much (mind you, I was never overweight!). When I got off the pill two years ago and lost a lot of weight, people told me I wasn't well because I didn't eat properly. There's just always something they pick to make my illness my own fault. Also, since they can't see it, they don't believe it, and think you're over reacting. I can't understand this. If a friend told me they were in pain, I'd never question whether they are really in pain! Even if it really was "all in their head", the suffering is still real. Psychosomatic pain is real pain too. So even if someone doesn't "believe" that a medical condition is real, it doesn't mean the afflicted person is not suffering. This attitude just doesn't make any sense to me. And it makes me really angry when someone makes these insensitive, stupid comments.

Maybe a part of it is, that people don't want to believe that some problems can't be easily solved. It's the same reason people tend to believe that for example sexual assault victims somehow are to blame for the assault, because they don't want to know that it could happen to anyone. They want to believe that bad things don't happen to innocent people. So I think that they also want to believe that if you get sick, the doctors can fix you and it makes them uncomfortable to see that some treatment didn't work.

[LeieH80]

Oh ladies thank you all for taking the time to reply. It's reassuring and comforting to know that I'm not the only one feeling like this, although it's horrible that you all feel like this at times too.

I'm looking into the endo diet - tho I have to say I am a comfort eater at times and this diet removes all that I eat! I think I'm left with dark green veg and some seeds and conclude I'd rather eat chocolate and take painkillers! Tho I think I am going to seriously have to look at refining what I eat. My gp has prescribed me some stronger painkiller - meta something acid I think it was. So next time it comes I do at least have another option for pain relief. It's more the emotional support I feel I miss from most, but I feel much more positive today after a better nights sleep and your messages! I'll battle on for now until such point as I need to refer myself back. Wishing you all a symptom and pain free week! xxxx

[Hidden]

Hi

I often feel the same and feel bad that I am in pain again. I had a lap and they couldn't get rid of much of the endo. I am on the pill as can't face another period. I have chronic back and pelvic pain. I am trying yoga, exercise, painkillers especially over night. I have also accessed counselling and CBT can help with pain and it's effects on mood. I am also trying to lose some weight and look at the endo diet.

I am also accessing occy health through work and women's health physio.

I think if you have never had the pain of endo you just don't get it.

I have also found the local endo support group really good and if my pain isn't well controlled I have considered accessing a pain clinic. It really can get you down and I had a good cry when I had really bad back pain on Saturday. But you aren't alone we are all in it together.Take care and lots of hugs xx