This is my first post sorry if it’s a bit long but I’m wondering if anyone can help or shares a similar experience.
I’ve been suffering with my pains for 7 years now. 5 years ago I saw a gynaecologist and they told me they told me they would put me on HRT for my pains and that was it. I refused to they discharged me. 3 years ago I was eventually referred to a different gynaecologist who suspected endo. Booked me in for a laparoscopy but it didn’t show anything up and again I was discharged.
Can it be missed?
My symptoms are now worse than ever before. I get severe stomach cramps and lose large blood clots during my period. And ovulation is another story. My pain is so severe I have to curl up with a heat pad. Sex is extremely painful during and after I can only compare the pain similar to child birth. I also have pain opening my bowels and during urination. I suffer really bad mood swings and tiredness. I am becoming so fed up with it been going on for so long.
I went back to the doctors a couple of months ago and they told me to permenatly take ibuprofen and live with it.
I’ve had 2 children and during pregnancy my symptoms completely went away. It took almost 2 years to fall pregnant with my second.
I’m now considering saving and going for a private consultation or looking for a private healthcare insurance that will cover me undiagnosed.
Sorry for the long post, if you have got to the end thank you for reading!
Sarah.
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Sarahlouisex
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Yes it can be missed. Gynea were in side me twice removing a cystic tumour and once a tiny simple cyst because of my pain and twice they missed it. In November ‘16 I pushed and begged, they said ok we do another one but we won’t find anything and you will not be having anymore surgery. Low and behold they found it on my bladder, bowel and pod. But they said too mild to caused my pain I’m describing. They discharged-me with no follow up. Looking at my medical records they had recorded I had a complete hysterectomy! I hadn’t, it had never been discussed! So I asked to be referred to a specialist endo gynea in Portsmouth. They have been much more understanding and due a lap in June. Don’t give up petal keep fighting we are all endo warriors x
So sorry to hear you have had a bad experience too. It seems far too common. I have been researching the BSGE centres and it turns out where I had my lap is one however it wasn’t done by a consultant who specialises it was done by a junior doctor. Thank you so much for replying I think i’ll go back to the doctors and push for another referral x
I'm so sorry to hear what seems to be a fairly common issue. Unfortunately, yes endo can be missed. We have quite different symptoms but that seems to be the way of endo. It's not just a 'bad periods and fertility issues' illness, it's so, so much more.
I've been ill for just over 4 years now. It started with abdominal pain, what I called 'stomach attacks'. It was the worst pain I could ever imagine. I've not had children but I remember thinking they're no way child birth is worse than this! I'd suddenly expand to look about 7 months pregnant. I then started to feel really unwell with terrible fatigue, rashes & lots of odd issues. I was sent to gastro and crohns, coeliac and ibd were ruled out & I was diagnosed with ibs. This was when I was 37. I'd had ibs from about age 11 until 28 when I did a gut healing diet and completely changed my lifestyle. Since then, I'd had no stomach issues and although I had these abdominal pains, my actual digestion was fine, I had no other ibs symptoms. My fatigue, pain & swelling continued & I was trying everything, private nutritionists and super restrictive diets, nothing helped. Eventually a GP examined my abdomen and thought she felt something so I had bloods taken & sent for ultrasound. This showed large fibroids, tilted uterus & thick womb lining. The bloods came back with elevated ca125 & I then had 2 months of believing I had ovarian cancer (I think my GP panicked). Eventually I saw gynae who were very dismissive but they reluctantly offered a lap to rule out endo. Because of the cancer scare, I wanted the lap even though I was strongly advised against it. My GP suggested I go on continuous pill while I waited for my lap, which I did and had a significant relief from my symptoms. The lap showed nothing so I stopped the pill, I was told that the improvement from the pill must've been from it 'resetting my hormones'. That was 2 years ago. My abdominal symptoms didn't return, I still get tenderness & bloating but nothing like before so I just tolerate it. But my fatigue stayed & it's been disabling. Then about 6 months later, I started having hip & back pain. It gradually got worse and I was eventually referred to orthopaedics and I got an MRI. I got the results from that 2 weeks ago and I have severe endo! The lap surgeon has been in touch, offering me an appointment to discuss what's went wrong but not until July so I have no idea what's going on.
But yes, a lap can miss endo. Apparently if its deep endo, it may not be visible on the surface (which an mri would pick up) and if the surgeon is not a specialist in endo, they may miss it. There are specialist endo centres which is where you'd want to be seen and a gynae can be a member of the bsce so you'd know they're specially trained. Although it's not like we regularly ask for a surgeons CV before being rolled into theatre!
If I were you, I'd push for an MRI of your pelvic region if the GP can refer for that themselves, or get that privately if you can. If you do have deep endo, that's probably the quickest way to get it seen and then the GP can refer you to the endo centre. While your doing that, get the GP to refer you back to gynae as your symptoms have changed /worsened and try get another lap by a specialist.
I'm so sorry you're going through this. It sucks. X
So sorry to hear about your experience too. I can’t believe how common this is to happen. I also suffer with migraines, nausea and extreme fatigue. I didn’t realise that an MRI could show it up, I’ve never had one so will push for that. The doctors don’t want to refer me because nothing was found they are so uninterested. But I will go back and keep pushing and eventually they will have to do something I guess. It’s so frustrating when you get no where and they make you feel like it’s in your head. My lap was done at a hospital that’s BSGE but by a junior doctor that doesn’t specialise so maybe thats why x
It is and it’s so hard to fight when you feel so rubbish. I’ve recently started taking raspberry leaf capsules. And a lady below has given loads of really helpful info on the endo diet which I’m also going to try. Just got to keep on, keeping on. Sometimes doesn’t feel that easy though x
Hello. I’m enlightened by your response to Sarah. I’ve been telling doctors & consultants there’s something wrong & asking for an MRI , offering to pay, for more than a decade. I have my 1st post hysterectomy op consultant appointment today & I’m going to ask for one & referral to an Endo specialist. I’ve been thinking of a private health scheme in past years & the more I read about Endo the more I wish I had years ago! Thanks for your info.
I'm no expert but from my own experiences, it seems that many Dr's are being very dismissive about endo. It can be a very disabling condition with many different sets of symptoms.
I'm looking into some more natural ways to deal with it too and that's a much more promising outlook than the medical approach. If you can afford to, it's probably good to find a natural specialist. It seems they're is a lot we can do.
Hi Sarah. I’m so sorry to hear of the pain you’re going through. The road to diagnosis is one of the toughest parts of this journey.
Laparoscopy is the gold standard for endometriosis diagnosis, but not all surgeons are created equal. You need to be checked by an endo specialist.
If you can afford a private laparoscopy, it might be worth booking one with an esteemed endo specialist. The pain you’re in right now justifies any healthcare cost. The priority is that you get diagnosed and pain free.
Have you tried the endometriosis diet to see if it reduces some of the pain? It’s a low inflammation diet which has helped a lot of sufferers. You can visit Endo-Resolved for free advice, or Google ‘enfometriosis Diet’. A good quality fish oil tablet can help lower inflammation, too, but you need to check there’s no soy used. x
Thank you for your reply, it’s definitely something I’m going to look into as being pain free or even just having something done to help would be worth the money. I haven’t heard of the diet so I’ll have a look into it today and get started straight away. Thank you x
If you’re in the U.K., the best gluten free bread, pasta and crackers are at M&S. I don’t think it’s more expensive than the gluten free ranges at other supermarkets yet the quality is way better. Oat, almond and coconut milk are great substitutes for milk.
For fish oil, I use Nordic Naturals Ultimate Omega, but it is expensive. As an alternative, you could eat wild salmon a couple of times a week. I also take Pharma Nord’s antioxidant Multivitamin with minerals. Again, it’s not cheap but it has so much in it that an endo sufferer needs.
Once the pain is manageable, a gentle walk can help lower inflammation, too.
I really hope this diet works for you, and that you get diagnosed quickly. I empathise fully as I’ve been where you are and it’s sheer hell. x
This is so helpful, thank you! Yes in uk so will definitely have a look at all the options above. I have also recently started taking raspberry leaf capsules recommended by a lady in Holland and barter yet to know if they are helping though. Fingers crossed x
You're not alone!!! I recently (November) had my lap (found it in numerous places) and my gyno actually told me if it's microscopic endometriosis they wont be able to find it with a lap.
I'm so sorry about all this. It really is a horrible disease, and every woman is different. Have you tried depo-provera injections? I was on those every 3 months for about 18 years(probably way too long, but hey). They worked incredibly well for me. No more heavy, clotted periods, very little pain, and no PMS! If you haven't tried that I'd certainly look into it. I'm in Australia so it might be called something else over there, but you could certainly google it. Good luck girl, I feel for you.
Thank you. I have another lap on Monday however this time with an endo specialist and am having the coil fitted at the same time. So hopefully that will help xx
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Adenomyosis suffers? Please give me your honest advice/ opinions please? I Feel so alone 
Please tell me I'm not the only one 
Confused and desperately need some advice please :(
I’m so fed up 
