Hello all. I was wondering if anyone would be able to shed some light or has gone through something similar? This might be TMI but thought it was better to be specific! I have been suffering with horrible periods since I got my first one at 12. I often get quite bad pains and heavy bleeding I sometimes bleed as long as 64 days, I also get spotting in between periods as well as vomiting, dihorea, constipation, migraines, lower back pain, occasionally pain during sex and fatigue. There’s also other symptoms or pains that come and go quite frequently including mental health issues such as depression. I have been back and forth to the doctors for years and I have had the following tests done; blood work(all clear, apart from inflammation markers), ultrasound(all clear), MRI (clear), colonoscopy and endoscopy as well as a hysteroscopy and physical examination but nothing can be seen. I am constantly losing jobs/ missing university due to ill health. I am trying my best to just get on with it. The surgeon who did my hysteroscopy wasn’t very nice and acted as if I was making it all. My local doctor suspects it may be endo and Others have suggested that over the years. Any advice would be much appreciated as I’m at the end of my tether! Thank you in advance!
Anyone dealt with this before?: Hello all... - Endometriosis UK
Anyone dealt with this before?
Try the contraception pill. I had it 3monthd straight no break then continue. You should refer yourself to a bsge centre for further investigation.
Thank you so much. I’ve been on quite a lot of different contraceptive pills including the pills that induce fake menopause but nothing so far has worked for the bleeding, it has for the pain though. I will look into the bsge centre! Thank you!
Innocent problem. I yet to have surgery as u was diagnosed state 4 endometriosis But since having the microgynon pill back to back I have had no pain. Bsge centre is a actual endometriosis centre who will be able to detect automatically your endo if you have.
Good luck and always here if you need anything else. x
Yes I can say I’ve had most of that, contraceptives don’t work for me and I bleed on them constantly with just a 3-5 day break if I’m lucky, sometimes it’s 1-2 days then go again. I had zoledex as a treatment and looking to have it again once I see a consultant. I was diagnosed with endometriosis 9 years ago and that took 7 years as GP kept managing the symptoms and wouldn’t refer me.
Thank you! I might speak to GP about zoledex.
Hello 3jellybeanx
Have you discussed going on GNRH treatments with your gynaecologist? Has he confirmed the suspected endometriosis diagnosis laproscopically? Imaging methods can sometimes look normal if you have the very early stages of endometriosis. Alternatively hormonal imbalances could also cause lengthy periods. I’ve had the same issue since I was 10 but was only diagnosed with endometriosis in my 20s. It was an ultrasound that confirmed the adhesions in the first instance. I tried all the contraceptives but because of migraines it induced, couldn’t really take them. There are others you can take like mefanamic acid with nothisterone in the first instance. I didn’t take GNRH until my surgeon and I had agreed I was at a very advanced disease stage. If your pain is bad I would suggest asking you GP to send you to a pain clinic so that you can think about options. Chronic pain needs more work to manage it than just NSAIDs.
How is your diet? Do you use a gluten diary egg and wheat free diet that’s plant based? Red meat caffeine alcohol trans fats processed food and complex carbs only worsen endometriosis. When I went plant based it made s huge difference to my bleeding and pain episodes. Exercising regularly when you aren’t in pain also helps. I came up with my own running regime along with the diet to control my pain and bleeding episodes which over time controlled all the surgeries I had too. I’ve had endometriosis for over 2 decades now and taking a more holistic approach has really helped. I hope things improve for you.
Thank you. I don’t really have a gynaecologist I have had one appointment with a gynaecologist and an operation to remove a suspected polyp which wasn’t there when they went to do the surgery. Not sure what is going on with me. My diet is fairly normal and I try to exercise as much as I can but sometimes that’s difficult with pain and heavy bleeding! I have been on menafanemic acid and nothisterone and no luck, I also take transeXemic acid to try and slow the bleeding.
You need to see the same gynaecologist surgeon or another gynaecologist (you can request for one under a second opinion) to see if there any other issues such as hormonal imbalances. Have they done any blood tests on you? Sometimes a full work up needs to happen before they can come up with a clear diagnosis but for now they must have informed you of a differential diagnosis.
Transamic should help.
I do think you need to go back and speak to a gynaecologist. Heaving bleeding, prolonged bleeding and pain is all common with endometriosis. Sometimes cysts which appear in a scan showing it’s the uterus can naturally burst. I’ve had ruptured cysts before which meant my surgeons weren’t able to find it. There’s always a lapse between the scan and the surgery.
I know this may not fix the issue but I hope you feel at ease somewhat knowing that heavy bleeding is a common trait of endometriosis. I know it’s hard but the only way to address the issues is clinically because the symptoms sound like you have endometriosis. But this needs to be diagnosed properly and sometimes you can have contradicting symptoms too. Endometriosis can be seen on scans. Mine was diagnosed 15 years ago via an TVS ultrasound which then prompted the diagnostic laparoscopy. MRIs show cases Of endometriosis too depending on the anatomy of the person. So although there’s a gold standard, it doesn’t always mean these methods would work for everyone. If your bleeding is unstoppable when it starts, that’s also normal for endometriosis. Your GP should be able to discuss other medication options with you. Good luck, I really hope you find out more information about your situation to help control these bleeding episodes.
If your gyno suspects endo, did he/she recommend laparoscopic surgery for official diagnosis? Typically endo can't be found on scans (including in my case) and can only really be detected via laparoscopy.
How old are you? Which inflammatory markers are high? Has a CA125 been done?what treatment are you on? Pco excluded?
Hello thank you I’m 22 and not sure what markers were high they just said that my blood tests were showing inflammation. I’m not on anything just now apart from transeXemic acid and pain killers. Pco has been excluded and yes I’ve had my cervix looked at and a Pap smear!
Also, sorry, has anybody looked at your cervix and done a pap smear?
Thank you very much!
My advice is not to waste your time with a doctor who does not specialize in endometriosis. Do research and find someone who will help you. Call around and tell them what you are looking for in a doctor and if they can help you. Even if you have to go far. It will be worth it. Also, I’m sure you’ve heard this plenty but endometriosis usually does not appear on ultrasound or MRI images. Mine did not. Diagnostic laproscope exam is the only way to really tell. Good luck with treatment.
I had the same bleeding episode and tried many different birth controls and various drugs to induce medical menopause and nothing stopped my bleeding. I even had the Mirena IUD placed in and it worked wonderfully for only 5 weeks and then my uterus just wouldn’t accept it clamped on. It came out while I was in the shower & bleeding came all over again. I did a lot of research and finally found something that worked, bio identical progesterone (200 mginserted vaginally) plus birth control. That combo was a success! Within 2 days NO MORE BLEEDING! It’s been over four years and no bleeding, no pain, no lumps on my tummy and no weight gain which I was worried about.
Hi, I had Ca125 bloods which was the first sign something wasn't right after years of horrendous period pain.. All ultrasounds clear but Mri scan had shown potential endometriosis. Laparoscopy this year finally diagnosed rectovaginal endometriosis stage 3. Was on the the pill from 18 till 36 years and wasn't until I came off to try for children that the daily pain started. Having to consider operation to detach uterus from bowel. It's a awful disease but starting an anti inflammatory diet had been good for me. Having some better days. I really hope you get the answers you need x
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