Hi ladies, new here but just don't know where else to turn.
I'm 25, I have two children, both heart warriors (one with Cardiomyopathy and the other with a atrial septal defect due for open heart surgery next summer). We discovered I carry a "mutated gene" (ACTC1) that gives my children genetic cardiac defects and so have decided to have no more, in time to be told that I'm endometriosis is so bad now I may want to consider a hysterectomy.
Consider? I'll jump at it tomorrow. Since having my son 10 months ago, I have had 20 days period free (not in one go either!). I bleed on average of 22 days per month, with a 4-5 day window (however this month I stopped bleeding yesterday, started again about an hour ago which is why I'm here.).
I'm fed up with the pain, the unexplainable pain that doctors ask "can you describe it to me". No, I can't. It feels like you want to be sick and rip your abdomen out and you don't want to eat but when you eat it seems to go away for a second because you don't think about it, there is no position that stops it. It's this dull pain that stays there continuously that I just cannot explain. I know what it is. I know where it's coming from. But I just cannot explain it.
It's took 7 years to get a diagnosis of endometriosis. My grandmother had cervical cancer and endometriosis and had a hysterectomy. My mother had severe endometriosis and had a hysterectomy after struggling for 28 years to conceive me.
Every day I want to cry. Me and my partner don't have sex. We can't. I just bleed. I'm just in pain. I'm exhausted from the bleeding. The doctors aren't interested.
What's upset me most today is I was hoping for some kind of miracle this week. It's our 6 year anniversary on Saturday, and we're going away (child free) for the first time in 4 years. I just wanted it to be special and when I stopped bleeding after 27 days yesterday I thought I was blessed, only to start again today and I just want to cancel the whole trip.
Im going to the doctors tomorrow to beg for help. I can't do this anymore it is ruining my life. I'm only 25 for Christ sake and I've spent seven years of that doubled in pain, bleeding, falling asleep randomly from exhaustion and the doctors just palming me off that I couldn't have endometriosis I'm too young!
When the gynae told me a few moths ago that I certainly do have it I could have kissed him. I'm due for a laparoscopy to remove what they can but if they can't the final route is the hysterectomy which I really, really cannot wait for.
They're also going to try one final thing, something called a JDM? Coil (I can't remember what it's called!) but neither the gynaecologist or I believe it'll work, it's just covering all possible treatments first.
Is there something they can give me to stop me bleeding? I cannot do this anymore. I have two cardiac babies in and out of hospitals and I just want some energy. I want to wear a white skirt without worrying if I'm going to bleed suddenly. I want to live.
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Barbie93
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I’m so sorry for you my endo is a different kind of shitty, with severe pains, numbness, crazy fatigue and a ton more, but I am “lucky” to only bleed 11/25 days of my cycle. My experience with the hormonal coil was constant mild bleeding for 1,5 years - BUT, it was a drippy bleed, which certainly would be an upgrade from yours. Then again, the same hormones in pill form made me stop bleeding alltogether from day 1 - then again that one gave me bad acne. Pros n cons. I’d def give it a go, can’t go much worse can it?
Oh one more thing, there is a drug called something like cycklocapron or similar, which I was ordered to eat to ease the flow. Haven’t tried yet, but they should make blood clot up easier, so you bleed less. But let’s hope you are lucky with the mini-pills or hormonal coil and stop bleeding from day 1.
Thanks for your reply anri, in the 7 years I've been put on everything. The implant, Mirena coil, mini pill etc. This style of coil is apparently different, but as you say, nothing else to loose.
I'm going to sit in the doctors tomorrow and beg for something to help stop / slow down the bleeding. I can't do this anymore 🙁
Oh ok, so I was not of much help a different coil? Come back and tell your experience, i didn’t know there were others! Still about the mini pill, it actually works very differently at different times - the first time my bleeding stopped completely, the second it was continuous, like on the coil and implant. On the same damn pill. So maybe in your situation it would be ok to just try again and see... i really hope something works for you, but luckily there is always womb removal, which is a nasty thought though at 25 (I’m 28)...
Bless you, that's tough, firstly , are you having excision with a BSGE endometriosis centre and specialist? Endo surgery is unfortunately not all equal and outcomes are far better with specialists who know the disease. Please push for this. It's not on how Drs treated you based on age, there are new guidelines coming out for Drs on referral and treatment of women in general. I also highly recommend and suggest that you get some therapy as its a lot that you are going through and to deal with. I hope you have supportive people around you and you get relief soon. Xx
I'm so sorry, I had this prior to my first laparoscopy and subsequent treatment
There are things which your gp can prescribe such as Norethisterone I then moved to tranexamic acid prior to going to a GNRH analogue also you could try contraceptive pill? If haven't already they can give that without a break , please push them to help you I had to but I couldn't carry on bleeding anymore. Make sure they check you aren't anaemic also
Having a hysterectomy may not get rid of the pain or the high risk of cancer cos of the endo but help with bleeding etc.
Sorry to hear of your added stress with your children.
My Endo is in other areas, I can't have anymore opps. I live in constant pain with Endo, digestion issue's, a ridged bowel, emptying issues. I have no children, my husband left, I had a break down, still have depression andI can't work!
It's been grim.I remain lost and broke.
You are young. Stay strong and my heart and thoughts are with you with the strife of life. xxx
There is a medication you can get from a gp you take for 7-10 days to stop the bleeding I can't remember the name.. they gave me it but as soon as I stopped taking it the bleeding started again! Maybe ask your gp it's not a solution to pain or the endo but you could at least enjoy your trip away without bleeding x
Thanks Newby and everyone else, I'm going to put some pressure on the GP - this isn't fair, I also think I need a blood test. I've had recurring headaches and tiredness for the past few months and the doctor just told me it's "the joys of children". I actually think it's my iron, surely bleeding for so long and the size of clots I pass (often 50p size) is not doing me any good at all.
Josandy- I'm so sorry, what a horrible situation you're in. I can't begin to imagine you're pain. xx
I'm just so fed up with constant pain and constant bleeding and unless you have it, you could never understand. I'm so glad I've found you ladies. X
I wanted children I did the IVF. But as the Endo is effecting. Eating, poking, walking, sleeping, working. Husband left, if I had children I realise I couldn't have coped or afforded them.
I second Mel80. You must do research and find an endometriosis specialist that does true excision surgery. Read this: angryuterus.com/excision-su...
I know you're not in the US but it can be a helpful tool. [edited to comply with our code of conduct] Had deep excision and a presacral Neurectomy (nerve cut from uterus to stop pain).
You can probably call a specialist(or email) on this site and get a recommendation there. Let us know what happens. I'll pray for your family!
You shouldn't have to beg. Maybe its time to change GP perhaps? I'm just thinking aloud. A blood test is no biggie. In the meantime, I would suggest taking spatone. It is a natural form of iron which doesn't make you constipated!
You sound like you need respite/break more often. Is there anyway you can leave the kids with close friends/family/godparents more often, so you can get some rest?
Doctors are very reluctant to do a hysterectomy on somebody as young as you which is why they are going through the speil.But at least now you are diagnosed they are trying something.
I'm still thinking. In the meantime, welcome to the family. We are always here. So please come back anytime. There are a number of options given above and more will come in, so I will shut up for now.
I feel your pain....i am in exact sameboat....except we haven't been able to conceive
...had Ivf which was sucsessfyl but we lost it....i am now undergoing hysterectomy... supposed to be November but December now probably....i cannot wait after 7 years of dealingwith this....haave you tried prostap injections...last 3 months and stop monthly bleed....failing that get on birth control pill and take it continuously that is what i a do and I don't get periods . .....good luck xx
Don't give up! Keep pestering doctors to find an answer. There is one. Keep posting on line too. Others may be able to suggest procedures and doctors. Hugs!
Just a gentle reminder that we need to be wary of naming/recommending health professionals, in line with our code of conduct: endometriosis-uk.org/sites/...
The best place to look for endometriosis surgeons is the BSGE website: bsge.org.uk/
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my endo is a different kind of shitty, with severe pains, numbness, crazy fatigue and a ton more, but I am “lucky” to only bleed 11/25 days of my cycle. My experience with the hormonal coil was constant mild bleeding for 1,5 years - BUT, it was a drippy bleed, which certainly would be an upgrade from yours. Then again, the same hormones in pill form made me stop bleeding alltogether from day 1 - then again that one gave me bad acne. Pros n cons. I’d def give it a go, can’t go much worse can it?
a different coil? Come back and tell your experience, i didn’t know there were others! Still about the mini pill, it actually works very differently at different times - the first time my bleeding stopped completely, the second it was continuous, like on the coil and implant. On the same damn pill. So maybe in your situation it would be ok to just try again and see... i really hope something works for you, but luckily there is always womb removal, which is a nasty thought though at 25 
I literally give up
Giving up, please help. 
I feel like I have Endometriosis but I’m not being listened to...
I feel like I'm going through hell...and I have no one to talk to
Feel like i always have a virus
