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Looking for answers

Hey, maybe a long one so sorry in advance!

I've ended up here as I'm at such a loss and wondering if it's worth mentioning endometriosis to my dr, I thought where better to ask that people who know what it feels like!

I'm 33 and I've had very painful periods since they started, with heavy bleeding that goes through clothes, large clots and weird bits that i don't even know what they are... pain that really can be anywhere - the best description I have is maybe like ''cycling shorts of pain'' lol, because it's down my legs, back, pelvis etc. I don't have a ''cycle'' , or if I do I couldn't tell you what it is, I can bleed for a month at a time, skip a month, bleed just for a morning, have two or three bleeds a month...I really have no idea when I will bleed. I have problems with digestion, bloating, pain etc which has been put down to IBS. I also get migraines which, though sometimes triggered through tiredness or stress, mainly come and go with my hormone fluctuations.

A few years ago I was put onto a new pill (cerrelle) which has helped reduce but not eliminate the pain and has reduced the volume of blood I loose so I no longer use incontinence pads and no longer need time off of work every month... But I do still get *strong* pain, before, during and between my periods and often still have clots or sudden rushes of lots of blood. I wear those new period pants more often than not.

I get flu like symptoms nearly every time, even a sore throat. Crazy mood swings where my mood can go so so low I have terrible thoughts, this lifts once I bleed and only then do I think '' oh, I don't want to die it's just my period ''

Over the years, I've had internals, ultrasounds, blood tests, a smear ( all '' unremarkable'' ) and been given various anti-inflammatories as well as opioids. I keep getting told I'm just unlucky as no one can find anything wrong with me, I've seen both nhs and private drs. When I've had prolonged bleeding, I get so so tired, so I've been given norithisterone so I can have a break. But after I stop taking it, the bleeding comes back so bad I don't feel like it's worth it to take it.

The last few months, I've been getting '' new'' symptoms, that though i've had before - they had stayed rather than fluctuating.
My abdomen looks like I'm pregnant, it feels heavy, to the point I've taken 4 pregnancy tests. I need to wee all the time and I'm feeling very full after eating small amounts of food. This led me to my nhs dr, who did standard blood tests like fbc and referred me for an ultrasound - which I'm still waiting for. In the meantime, I have panicked it could be ovarian cancer, even though I'm young, so I've been to a private GP to get an ultrasound and relevant bloods quickly. These all came back normal, so now I'm being referred for a transvaginal ultrasound, which I've never had before.

Really... I'm not sure what I'm looking for here. I'm just sick and tired ( mentally and physically) of knowing what I experience isn't normal, but being told it is and nothing being found. I keep doubting myself but then I speak to other people, or think back to taking 120mg of codeine and it not touching the pain and I know it's not. I've just had one 7 day period, followed by a 3 day break and now I'm bleeding again.

If you're reading this and have endometriosis, does this sound familiar or could it really be that nothing is wrong, I'm just unlucky?

  1. Sounds like you need to see a gynaecologist regardless.

    1. absolutely agree. Thanks for being here for our community members. How have you been feeling? -Kimberli (team member)

  2. - I think, if you are feeling off and like something is wrong, I don't think it hurts to bring up endometriosis to your doctor. Honestly, how you described your symptoms, they sound 100% like mine. And I am sure many others can relate as well. But heavy bleeding, pain, anything that isn't normal, should be checked. For years I had scans and blood work come back perfectly clean too. And while it is frustrating-I knew I had to keep fighting because something was not right. It took me many GYNS before one listened to me and said he would do surgery to check for endometriosis. Of course, these symptoms can also be from many other things. So it is important to make sure to rule out everything you can with your doctor. I also have fibroids which causes that heavy bleeding too. I can't tell you that something is or isn't wrong though but like I said, your story 100% sounds similar to mine. And I am so sorry you are dealing with this all. But you certainly came to the write place and we are here for you to help you through. I would suggest chatting with your doctor, if he or she does not listen to you, I would maybe look for a new doctor for a 2nd opinion and so on until someone listens. You can also check out Nancy's Nook - a group on FB- she lists a bunch of endometriosis specialists that you can search for in your specific area and surround areas. Don't give up hope! Hoping you find answers and relief soon. And know, we are here always so reach out anytime you have questions, need to chat or vent. And keep us posted on how everything is going <3 Hugs. -Kimberli (team member)


    1. Thank you, I think really I'm just here to hear other people say, yeah that's not normal. I'm sure you know, it just feels so frustrating all the time to be told you're fine when you're not!
      They didn't find anything on the internal scan yesterday except to tell me I have a tilted womb, which is news to me but, apparently wouldn't cause issues and is normal. I'm hoping now if I collate all this info and keep a symptom diary and take it to my nhs g.p, we can then see what the next step is to try and find some answers.

      1. For endo, I had to get a specialist DR to do the vaginal ultrasound for them to confirm that I probably had endo which was confirmed during Laparoscopy. So the one you had may not have found endo depending on the person doing it.

      2. that's interesting, I don't suppose you know what the name would be of someone that specialises in that? I keep thinking maybe I would be better to see if there was a ''well woman'' clinic or something similar I could be referred to, as I assume people working there would be specialists? The doctor I saw for the internal scan yesterday's specialties are listed as general radiology, gynaecology and musculoskeletal radiology.

    2. Hello I'm so sorry you're dealing with this! I understand the frustrations of being told you're fine and nothing is wrong when you absolutely know something is not right! I think you should absolutely tell your doctor about your suspicions. When I was younger I was under the impression that doctors know anything and everything about health and even if they didn't that they could probably do a quick search in some database about your symptoms to get results back in moments. But the reality is that a lot of doctors don't know what endometriosis -- or many female reproductive afflictions -- are and wouldn't recognize them. Your doctor will probably recommend you to a gynecologist, the specialist in these kinds of things. Whether it's endometriosis or something else, I think it is absolutely a good idea to bring it up. Some conditions can unexpectedly be life threatening. At the very least, you can rule some things out after talking with your doctor and a gynecologist. At worst, your doctor may be a pain to deal with and it will be time to find someone who takes your symptoms seriously. Best of luck to you! I hope there's someone in your life you can get some good, good hugs from, cuz we're right here with you and we'd give you hugs if we could!

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