Super new to all this so I hope I’m doing the right thing posting but I’m currently in bed in tears at a loss…
For over four months now I’ve had random bleeding (post sex and also just random bleeding) , nausea, bloating, aching across my pelvis and lower back and now this week horrible fatigue. I used to run half marathons and now I lay around trying to find the energy to just make dinner or clean up. I’m nearly 39, I have one son (8yrs old) and never had any real health issues. I’ve been on microgynon for years and so I’m at a loss as to why I’m suddenly having gynaecology issues!
I had an internal ultrasound and they told me I had thickened lining and then I was referred (on the cancer pathway) for a hysterocopy (which takes place on Monday), a blood test flagged low b12 but I’m a vegetarian and so I don’t think that’s anything to do with my symptoms. I just don’t think this is cancer, I’m too young, no family history etc. I know it’s a possibility but I’m more sure it could be endometriosis. So my question is… can you get endometriosis just out of the blue and are my symptoms ringing endometriosis bells?
Any advice or expertise/similar experiences would be fab to hear.
Xxx
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Nina153
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We don't know a lot about how endo develops but it can be a case of not getting endo out of the blue as such but of the symptoms revealing themselves suddenly having progressed to a point that the pill no longer controls symptoms. This is a well recoded phenomenon - endo being masked for years or even decades to reveal itself once it has reached a stage of no longer being controlled by medical treatment.
I should get the results of the hysteroscopy out of the way before considering endo - I really hope it goes OK.
If the pill is now not working to keep the symptoms under control what would the next steps be potentially? Are there other treatments or is this my life now? 😔
Hi Nina, as endometriosis and in general everything can affect on the female reproductive system including your diet. I would recommend you to read about low FODmap diet as a vegetarian I assume that you are consuming a couple of vegetables that are high in them. I hope your surgery goes well. All the best x
Thank you - I will have a look at the low FODmap diet for sure. Hopefully on Monday I can get some more solid answers. Do you know if the doctors would even look into diet? Or would that be something more from experience and trial/error? I am just wondering what to push for if I do get a diagnosis.
I am a professional clinical nutritionist and 99% percent of the doctors anywhere does not have reliable knowledge about diet culture, let alone specific problems. Just to let you know that at my latest gastroenterologist appointment the specialists asked me for advices. So that sums up what you can expect from them. They haven’t had any types of education on dietary restrictions, nor specific cases. I am suffering from stage 4 endometriosis for 20 years, part of my bowels have been removed,developed digestive problems and bone problems and only because of my knowledge I have extended the time period of having a somewhat quality life.
This was my concern haha. There’s so little knowledge at that level around diet and nutrition. I’m really interested in nutrition and like to think I’m pretty well versed in a healthy balanced diet (we bake all our own sourdough bread, we grow our own food, we don’t have processed foods, we have home cooked meals 99% of the time.) so it’s always hard to get better info from a clinician and of course it needs to personalised too, there is no one size fits all.
I may tap you up for more information once I have my diagnosis and I’m a bit clearer as to where I am!
Well technically any ingredients that you process is processed food and nothing wrong with processed food by the way. For example smoothies are highly processed and carb dense yet many people consume it daily which isn’t a wise choice as our body was designed for solid foods mainly. There are certain circumstances when you still can enjoy the benefits of it like after an exercise. Etc… Lots of misconceptions out there and sadly all of these “influencers” are causing irreversible damages. Especially on TikTok. :/ you can follow scifood babe, I have an IG but not posting often, every now and then. It’s plate_coach you can message me there tho all the best x
Thanks for posting about your experiences - it's lovely to see that a couple of our other forum users have reached out to offer their support.
Sorry to hear you've been experiencing so many distressing symptoms - it certainly sounds like endometriosis is a possibility. On our website you can find a fairly comprehensive list of symptoms: endometriosis-uk.org/endome...
We also have a pain and symptom diary on the website that you can use to track your symptoms so when you see your doctor or consultant you have detailed information about the issues you are experiencing.
In addition, you can download our Endometriosis Treatment Pack here: endometriosis-uk.org/endome.... This contains some really helpful information about managing pain.
Wishing you all the best with your hysterocopy on Monday.
Thank you so much, I will certainly have a look at the links you shared.
I do have one more question ... before I was on the pill ( which I probably started about 4/5years ago) I would have regular periods and with minor discomfort for perhaps a day before the bleeding started. I would have average bleeds (never bled through pads or tampons or anything like that). Is it still possible that I had endo? I know some women can have it without symptoms but is that rare? Would there have been some red flags or can it really just be "dormant" and then suddenly cause so many issues in such a short space of time?
From my own experience, I had what you would describe as 'normal' periods in my teenage years with dull, achy period pains. Then in my early twenties I had sharp, stabbing period pain where it felt like someone was taking a knife to my insides. This only lasted for a few months and then my periods returned to normal. In my late 20s (when I was having investigations for infertility) I was diagnosed with stage 4 endometriosis. It is possible for endo to be 'dormant' and then flare up suddenly causing all sorts of unwanted symptoms.
Bless you - just take it one step at a time and see what comes of the hysterocopy first. The best advice I can give you is to be kind to yourself and don't push yourself too far if you're feeling tired/upset or in pain. When I was going through fertility treatment I felt as if everything was out of my control so I booked regular acupuncture sessions. This made me feel more in control - that I was doing something positive for my body. I'm not saying acupuncture is for everyone - some might prefer yoga or pilates (lots of free videos on YouTube) - others might prefer mindfulness or deep breathing. There are loads of ideas in the Endometriosis Treatment Pack that you could look at (endometriosis-uk.org/endome.... Hope you find something that helps you cope with the stress of awaiting a diagnosis x
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