I really don’t know who to turn to. I’ve been to see an endo specialist privately who wants to do another lap. He says he’ll have a really good look around, but he believes my endo to be minimal. I struggle so much with pain/bleeding at and around ovulation. My bowels are pretty horrendous before ovulation and period, and I have a near constant dull ache/ heaviness which is fine for the most part. Sex is usually horrible, too.
Because nothing’s come up on my MRI (ultrasound said differently, but nevermind), and when I was diagnosed previously I was only a mild case of endo, he won’t look to see me on the NHS because he only deals with the more severe cases. But I just got the quote through and I could cry. What if I go for it and he finds nothing? I genuinely feel like it’s all in my head now and that I shouldn’t bother putting my partner and I through the financial stress.
At what point do you just put up and shut up? I can work, I can do most things. I just know things are ramping up and I can’t be in the place I was when I was 19 (I’m now 32).
I don’t know what I want from this. I just feel like such a failure to my family and then such an imposter when some women are struggling with stage 4 endo and are having to have massive operations.
Bee x
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Bee_22
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I’m so sorry you are going through this. I had a similar experience and went down the private route; after the NHS failed me.
I had a CT and MRI but nothing showed up. It was only till I had an ultrasound, the nurse found something that was related to endo (this was before my second surgery). Regrowth is common and having a second surgery, and the experience of a specialist surgeon should help. He will remove it, explore further to see if there is more to the story and give you a long term plan to help treat and manage your endo.
Someone who is in stage 1 can have the most horrific pain, and others who are in stage 4 can have no pain at all. Everyone’s journey with endo is different.
It isn’t in your head, so many of us experience this feeling all too well and we push past the pain until it breaks us. You are not a burden to your family, you are loved.
Whatever decision you make, it needs to be the right one for you.
Hope everything goes okay and sending you hug wherever you are. X
I think private doctors will do it because you are paying but if it's only superficial at this point then I would be looking at the rest of my life and making changes. What's your diet like? Do you eat low inflammatory? Do you exercise and walk a lot? Is your sleep good and do you do pilates or yoga? What's your stress levels like? Do you drink alcohol? What supplements do you take? Endometriosis is a life long disease but many many women have long periods in their lives where they have managed to quieten the pain and improved symptoms. It's hard but perhaps you could use the money you'd have paid for the operation to give yourself some time to reassess other aspects of your life to try to improve things which will then impact the pain. I did an overhaul of my life in my early 30s and it made a huge difference. If you are overwhelmed then just press pause and reassess things. Be kind to yourself xx
I eat well, I try to stay away from as many processed foods as possible (my husband’s big into healthy eating, and we both eat the same foods). I’ve followed the low fodmap diet and I stay away from gluten. I walk every day (I have a dog) and I go to the gym 3 x a week at least, and do yoga. I have a three year old, but bar that, I live a pretty stress free life haha. I don’t drink really, once in a blue moon and I take vitamin D, C, B12, iron, magnesium and oil of evening primrose.
At this point I’m willing to do anything else to relieve pain, so if you have other suggestions, that would be amazing! xx
You are doing everything already lovely. If you are doing all this consistently and you're still in so much pain then I'd consider zoladex or prostrap to see if it helps. You'll need addback HRT too but it could give you a pain free twelve months x
Has anyone ever suggested having prostap injections to you? This could be a non invasive way of seeing if the pain is down to endo? They switch off all your hormones. Don’t get me wrong the menopause symptoms are not great, but they can give you low dose HRT to help alleviate. You would only need to be on it for 6 months. If the pain subsides then it is highly likely it’s endo. If it doesn’t then you know you need to look for another reason. I know we can also be more likely to have neurological conditions such as fibromyalgia. My endo was dismissed for a long time as the worst episodes where when I ovulated not my periods. The only other thing I can suggest is going on the pill and taking it all the time to stop ovulation. I feel like multiple surgeries are not a good idea as they increase the risk of adhesions forming. Apologies of these things have already been tried. I have stage 4 deep infiltrating endo. I am due a bowel resection and full hysterectomy soon. But I have tried these things and they have helped. I had a laparoscopy in 2017 and it did help but I would say that after 3 years it was coming back. It’s a lot of money if you have to go private and pain for not a lot of relief. But this is just my experience.
I too am really sorry you are going through this. Endo pain is hard to explain to other people. But you family will want to love and support you. I hope you find a solution soon. x
Hi can I ask where you are having a bowel resection? Also how old are you? I am 51 and they are not keen on doing it. I hemorrhage constantly without zoladex x
I am 45 and I am going to the Royal Stoke hospital. The endo has grown through my intestine in 3 places. I have already been hospitalised with a bowel obstruction last year which luckily resolved without emergency surgery. Hence no choice but to have the resection and hysterectomy. They say surgery is inevitable and would rather do it as planned than emergency. I’m pretty terrified to be honest. My pelvis is frozen so I’m still not convinced there isn’t going to be a whole lot of damage done 😱 the resection is the same size as a bowel cancer patient ( that’s how they have explained it to me) so I’m trying to get my head round the idea I might wake up with a stoma.
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