To cut long story short, I was diagnosed with severe endometriosis 6 years ago after a cyst exploded. I have had 2 surgeries, zoladex injections, marina coil, mini pill, depot-provera injections and the contraceptive implant. I have bled through all of these and have been on a seemingly consistent period since my first surgery. The last consultant I spoke to said my scans don't show a reason why and to wait a few months to see what happens.... its been six years so i don't think a few months will make any difference.
I am in my mid 20's, I have no sex drive, no self confidence and never had a long-term relationship largely due to the problems I experience. Part of me wishes they would just remove all my reproductive organs because at this rate I won't be in a relationship long enough to have my own children, that is if that's even possible for me right now. The other side is who would even want to be with me? I bleed 24/7, it makes me feel so ugly and no one seems to understand that is all the other symptoms I have every day alongside the bleeding. I am in so much pain constantly that I just feel miserable.
I honestly feel like giving up.
Has anyone else had a vaguely similar experience?
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endoqueen2
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oh my goodness you poor soul. it’s bad enough to be in pain constantly but to be be bleeding continuously too!! I can see how it must be too much but Don’t give up though!! I’ve had endo for years and more recently diagnosed with adenomyosis. I’ve never taken hormones I don’t know why but always had a feeling that they wouldn’t help. Are you with a BSGE endometriosis centre? It’ll help to have a specialist. I know this disease gets you feeling so low, so get a referral to either a counsellor or Cognitive behavioural Therapy or someone to help with the mental health aspect. Also try some complimentary therapies, acupuncture, energy healing, tai chi - anything to help balance your mind & body. Also good pain management, make sure that the Dr. Is giving you what you need, you should t have to suffer. As for a partner, someone will come along - they usually do when you’re least expecting it or when you find that you’re contented with your own company. For now focus on helping yourself so that you’re ready for a relationship. Wish you well 🫶🏻
thank you for your reply, we don’t have endo centres in England but I’ve been with 3 of the top consultants for gynae and they jsut don’t seem to know what to do with me! I will definitely look into some mental health support, finding this online community has been a massive help already!
Hi Enodqueen I’m also in the U.K., England There are 17 centres, here’s the link: bsge.org.uk/centre/ go to the menu and look up the closest centre to you. Then go to your GP and ask for a referral to one. But do research what other peoples experiences have been with surgeons. I’m not dismissing your gynaecologists but there’s a huge difference between a general gynaecologist and a specialist at the centre. I think that they have an extra 2 years training in endo’. They also do excision surgery where as some general gynaes just burn away the top of the endo lesions and don’t get all of it (or even manage to spot it in the first place!) You shouldn’t be expected to accept that there’s no help for you. Good luck x
Hi Endoqueen. I'm so sorry to hear about the situation you're in. Six years of non-stop bleeding is horrendous. Have you tried PALS at your hospital to try to push your treatment forward? Simo7 above asked if you were in an endometriosis centre - if you already are and they can't help you, they need to refer you on to somebody else who can, they can't just leave you as you are. Xx
hello! Thank you for your reply, in England or where I am we don’t really have centres as such just consultants. They aren’t putting me on anymore treatment as I’ve exhausted the options apparently so they’re just focusing on pain management 😢 I’ve seen 3 top gynae consultants and they jsut don’t seem to know what to do with me! They don’t seem to understand because they aren’t living it
Hi. Do just check with the BSGE link above but apart from that I hope your doctors can find a solution for you soon both in terms of pain and to stop the disease progressing. Take care.
Hello there sorry to hear your suffering this way I can relate to this as i have been down a similar path myself when I could no longer take it anymore and was beside myself because I genuinely could not see a way out the specialist gave me something called ‘syranel nafarelin ‘ this is a nasal spray and for some reason they don’t seem to give this out very much as I believe they may see it as a last resort it is used to treat endometriosis and is used in IVF also . I personally had my periods stop for two years with this and because there is no cure at the moment I believe we are all entitled to a break so this may be worth looking into if your a suitable candidate for it. Hope this helps .
RepliesHello there I truly feel your pain. After I gave birth to my daughter in 2008 I started to have alot of new pain and bleeding. Was diagnosed with endometriosis. The bleeding was severe and drained me of energy. I was put on numerous contraceptive pills, implant, coil nothing seemed to work. 8 years later I literally had to beg for a hysterectomy. They dont like doing it if your too young. But in 2016 I finally had the surgery and yes for me it did stop the day to day bleeding. After I did enter into a relationship but sadly still had pain during and after sex. It took me a long time to come to terms with the fact that I could not have full sex it was just to painful, and caused so much pain days after. I'm OK with maybe foreplay you know and I'm lucky enough to find a man that is OK with not having full sex. (Toys are fun) I dont want you to give up. There is light at the end of the tunnel if you can make important decisions (possible hysterectomy) and be comfortable in your own skin and say to yourself 'this is my normal' life can go on with a few tweets.
Talk about your feelings too dont bottle it all up. I do hope you find peace xxx
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