This could be quite a long one and for that I’m sorry!
I was a healthy, symptom free 32 year old until 30th August of last year. I suffered a pregnancy loss and had months of complications following this. I had retained tissue and bled heavily, on and off until mid November when it settled and I went back into a normal cycle, with no more retained tissue (confirmed in a private pelvic scan in January). However, I’ve never lost the pains.
My pains are:
Lower back pain
Pelvis pain - hip pain, bum cheek pain and period type cramps nearly every day.
Sometimes I have pain in my groin.
Sometimes I get pain down my legs, mainly upper thighs.
Recently I’m getting a lot of bloating! I’ve never experienced this before in my life and I’m amazed at how painful this is.
I have been backwards and forwards to the doctor and have had the following suggested to me:
Hormonal imbalance from the pregnancy loss - given combined pill. I honestly think this has made things worse.
Kidney infection - treated with co-amoxiclav. This gave me thrush!!
Viral - don’t even get me started on this one!
Pelvic inflammatory disease - given two antibiotics which made the thrush even worse and symptoms are all still there. I finished antibiotics for this on Monday. All swabs are clear of bacteria though, but last one showed thrush. I have lots of discharge (yellowy!) and vaginal irritation but I am guessing this is from the thrush results as opposed to anything else? 🤷🏼♀️
Does this sound anything remotely like endo?! When I went for the private gynae scan, she said endo is something I should explore.
I have another pelvic ultrasound tomorrow (NHS) but I know that can’t necessarily show endo, and as I only had a private one three weeks ago, I don’t think it will pick up much.
I have a colposcopy booked for 5th March. This is based on my own fear really, and that gynae wise, my cervix is the only thing we’ve not really looked at!! I have no abnormal bleeding and my last two smears were normal, but I’m now overdue (by months, not years) because i keep being told that PID/thrush could throw the results. The pelvic pain and back pain worries me, even more so now I have the vaginal irritation and discharge (although probably thrush related).
As I say, I’m 32 and had no problems prior to the pregnancy loss. My mum has had a chocolate cyst removed once - I believe endo related.
Written by
Katieeee
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You 100% have endometriosis. Trust me. Welcome to the world of such a common condition (1 in 10 girls have it), but with probably the least awareness in the whole wide world around it. its 2019 and there is a total lack of awareness still. Your gynecologist sadly is not skilled enough to treat you for endometriosis if he doesn't recognise your symptoms as being endometriosis. Run a mile from your gynecologist, you deserve btter than this. The only way to treat endometrisois is to have a laparoscopic surgery. The best way to remove the endometroisis is by deep-excision surgery which is the gold standard. If you surgeon is not skilled enough to cut our your endometriosis by deep-excision surgery, and can only burn your endometriosis off, then again run a mile. As burning off the endometriosis leaves you in excruciating pain after your surgery for months/years. All I can recommend to you to answer all your questions is to read this book: "the doctors will see you now", Author: tamer Seckin, M.D. He's one of the best endometriosis doctors in the world. one you can 100% trust for a source of information. Also check out his website: tamerseckin.
Lastly, buy this book, or a few copies!!! and pass it onto your family and others, and tell everyone you know about endometriosis. Tell you GP, tell your old school, tell your family. You didn't know you had it, because you school didn't have any awareness about it, your GP isn't even trained to diagnose their patients with it. And you family have probably never heard of it.
I’ve battled with endo for 22 years. I’ve had 3 laparoscopic surgery’s but it comes back. Finally found a private gynaecologist surgeon who scanned me. And MRI scan will and does detect endometriosis. You don’t need a laparoscopy to diagnose properly. I’ve had three and the damn disease just comes back. I believe I’ve not had the right treatment. I’m going private now and finally have access to the right team with the better knowledge and access to the right tools for the job. NHS are amazing but they have limitations and believe me, I’ve been victim of that for 22 years. Now I am childless and riddled with the stuff. The MRI scan picked up the severity of my endo and now I have to have a full abdominal hysterectomy and part of my bowel taken away with the possibility of a colostomy bag. My advice to you is INSIST on an MRI scan before they start messing about, stabbing in the dark trying to chase this awful chronic disease. I wish you luck xxx
Cheshire_Ball, although you can see endo on an MRI because you can't always see it means it isn't a formal method of diagnosis and nor is it recognised by other specialists as a formal diagnosis. Other diagnosis methods may show up endo but the fact that they may not means they can't be used in that way The extent of endo can only be seen through a laparoscopy.
According the NICE guidelines website under Endometriosis, the only accepted method of diagnosis for endo is a laparoscopy. This is supported by the endo uk charity groups notes; the people whom set up this group endometriosis-uk.org/gettin...
I'd be careful about the definitive information you offer; as the MRI may in your case have picked up your endo, but it isn't recognised as a formal method so it should not be suggested as an alternative to a laparoscopy; a good specialist whom is on the BSGE website will only use the laparoscopy as the diagnosis.
Ok understood, apologies for giving wrong info if incorrect. Was just going on my own experience and 22 yr long journey. Thought it might count for something. I feel very angry about the lack of accurate advice and treatment I’ve been given which has led to to where I am today and maybe wouldn’t about to be losing part of my bowel as well as all my female organs and no kids. I came here to support as well as take support. I wish my laparoscopies, all three of them had been enough 😥😥😥😥
farahziya is right - although endometriosis can sometimes be seen on scans such as MRI and ultrasounds, this is not the case for all people. Endometriosis is best diagnosed and assessed by actually looking at the disease. This is the only means of making a definite diagnosis, whether it via laparoscopy (keyhole) or laparotomy (cut into the abdomen) and often a biopsy is performed to confirm.
Your story is very similar to mine. I was a fit & healthy 36 year old with no symptoms until I fell pregnant. Within a few days I had pain in my right side that was getting worse by the day. I became lethargic and was struggling to stay awake. After weeks of tests, internal scans and investigations no one could tell me why I was so in so much pain and felt so ill. At my ultra sound the nurse told me it might be an ovulation pains as the pain was prominent near my right ovary. Am not a nurse but how could I be ovulating at 10 weeks pregnant? I lost the baby a few weeks later. I continued to have back pain, groin pain & pain through my pelvis. It became excruciating to have sex. I was referred to a gynaecologist who immediately diagnosed endometriosis. He advised the best treatment was pregnancy or hysterectomy. I chose neither and was given a laparoscopy to remove it. After a year it returned but as I didn’t want a hysterectomy I had a coil fitted. This stopped my periods and reduced my pain dramatically for 5 years.
Does anyone have experience of things being WORSE on the combined pill?? Everything I read suggest it as treatment?! But in my case, there’s a definite correlation with it being worse. I’m on Microgynon 30 and I’m on pack two!
I have just come back from my scan and a small amount of free fluid was seen. I know free fluid can be PID, but I’ve been treated and no better, and the fluid amount was small! Free fluid can be an endo sign too can’t it?
Yeah all clear and they said they would expect me to feel better now so they don’t think it’s PID. This was a scan so report goes to GP and then further action. I’m going to push for laparoscopy now
I work nearly full time, in a senior role and I have a daughter. It’s super super difficult to manage. And I’m starting to feel clinical depressed by how long this has gone on for. I have naproxen for the pain.
Mmm i just recently feel the pain 4-5 months ago - the uncomfortable stabing pain..
since the loss i just had little cramping not severe, i still can travel and going places.but now 4-5months ago, the pain bothers me when I’m sleeping, more nausea and anxiety
Dr doubt i have PID and antibiotics didn’t cure me, but i still taking antibiotics
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