so fed up!

[Puffle]

Hi, just wondering if anyone else experiences this:

Background: I was diagnosed with endo and adeno in 2019, after finally being referred to a gynae due to prolonged heavy bleeding. Since my very first proper period (33 years ago) I have bled heavily and experienced severe pain, fainting every month and so on. I was always regular as clockwork though.

Since that first prolonged episode of 63 days bleeding, my periods have been unpredictable. I can bleed from 3 days upwards, my longest was 74 days. I’m passing huge clots, flooding, occasional hot flushes, constant dull cramping with acute cramping episodes, general abdominal discomfort, ibs, back pain, feeling exhausted constantly and the list goes on. I’m currently bleeding - day 41 with no sign of it stopping. This morning my shower room looked like I’d murdered someone after passing a huge clot while getting dried after a shower!

My gp only ever offers norethiserone - which my body reacted badly to stopping the first time and second. Or, having the mirena coil fitted- which I’ve read is contraindicated with fibroids, endometriomas etc, which I have.

So, if anyone has had a similar experience but was offered a different solution I’d really appreciate hearing about it. I’m so fed up bleeding so much and all the associated extra work of changing clothes/bedsheets multiple times etc. not to mention the interruption to my daily activities.

Thanks in advance.

[Chel91]

Are you on a wait list for excision surgery? Have you had surgery before? Can you ask the GP to refer to Endo specialist center? Paying privately is expensive, but it is an option if you are able to. If your GP doesn't agree, then keep making appointments or seeing new GP's until they do.

I have the same extremely heavy periods, blood clots and extreme pain. I just had excision surgery and got my period later that week. I had basically 0 pain. I have never had a painless period in my life. I'm still in shock. We don't need to live like this!

[Puffle in reply to Chel91]

I’ve never been offered surgery for this, I have been back and fore to numerous gps about my periods. Always told its normal to have painful periods, and that I just bleed a lot more than others.

In the last few years my husband and I have been desperately trying to conceive, and refused ivf because it would be dangerous for me apparently. So I appreciate the gps suggestions have been limited due to that. And I suspect because of my age I’ve been labelled as ‘near menopause so don’t need to bother with expensive treatments’ by gps more recently.

However it is now apparent conceiving is never going to happen. Apart from anything else- I’m bleeding more than not and in so much pain, so doing the deed is last thing on my mind.

Paying privately is not an option for me.

Thanks so much for reading and replying. I’m glad you got some relief after your excision surgery, I hope it continues to help you 🤗

[BloomingMarvellous]

You don’t say what age you are, but you maybe experiencing peri menopause ontop of the adenomyosis here. Treatment pathways for adenomyosis vary from endometriosis in that the standard view of most UK medics is it only resolves with hysterectomy which you don’t mention as an option offered to you. Any treatment offered normally as an end to manage symptoms before they operate. There are other views developed around Adenomyosis in other countries such as New Zealand / Australia but they are early days so can’t really comment on the legitimacy of it or not.

It sounds as if your GP may not be informed enough on this front to proffer the options available to you. Asking for a second opinion and finding a more proactive GP would be my suggestion. You shouldn’t have to suffer

[Puffle in reply to BloomingMarvellous]

thanks so much for your reply.

I have been saying to all the gp’s I’ve seen for some time now, I suspect it’s the start of menopause, or peri menopause. But they say I’m too young. I’m 44. Hysterectomy never been offered as an option. That could be because for the last (nearly) 10 years we have been trying for a baby. If i hadn’t so desperately wanted a child I would have asked for a hysterectomy when I was in my early 30’s - but I could never let go of that hope that I would one day be lucky.

Within the last couple of years I’ve lost the will to push my gp’s as they always only offer the two options in my original post.

Thank you ☺️

[BloomingMarvellous in reply to Puffle]

Piffle ! Your never too young for the peri or actual menopause - honestly not good enough and misinformation. Go to Dr Louise Newson’s site Balance.There are loads of resources there for you and your erstwhile GP. Frankly they need to get up to speed. Perhaps find one that is qualified to discuss menopause.

[Tricky19]

Hi Puffle, I am sorry that you have gone and going through so much. Has your GP ever referred to a gynecologist, in my opinion, with what you explain if he\she hasn’t is shocking and reportable I would say!

I think you need to see a specialist.

[Hk23]

my symptoms were exactly the same as yours. I have been on zoldex injections for 6 months and was relieved. i managed to go 6 months without bleeding. though I would like to warn you that side efects are horrible. DO a bit of research if you want to go through with this treatement option.

[Hk23 in reply to Hk23]

sorry i have read other replies, and understand you are trying for a baby, so i suggest second opinion doctor and may be surgery may help.

[G3miniStar]

Are you under a specialist already? If not I'd say immediate referral! You poor thing, sounds awful! Have you also had any investigations for why you can't get pregnant also?

[Puffle]

Update, after another thoroughly horrible couple of days, I saw a different gp today. Poor woman - I had a complete melt down in front of her. As a result, and because I have all but accepted I will never be a mother I’m being referred back to gynae.

Apparently because my initial referral coincided with fertility investigations gynae took a step back as treatments they could have offered were not compatible with conceiving - I did wonder, but none of the Dr’s bothered explaining this at any point!

So the re-referral at least is something, the gp talked today about potential treatments I may be offered.

Fertility - unexplained infertility. IVF refused because it would be too risky for my health, my age and chances of success deemed too low to permit me onto their list.

Thank you all for your replies, you’ve helped give me the nudge to try the gp again and to make sure she heard me. Hopefully won’t have too long to wait and will be heading towards relief 🤞

[Chel91 in reply to Puffle]

Glad you are getting somewhere. Make sure you see someone who knows what they are doing - get referred to a specialist endo center / surgeon if you possibly can. I would be tempted to avoid a Hysterectomy at first, and get all the endometriosis removed and see if your symptoms become manageable. I've heard that they often do get better without the need for Hysterectomy.

I'm sorry you are struggling with fertility issues. It's something a lot of us go through, myself included. I've now gone abroad and having treatment, which I'm hoping will fix my issues. It's incredibly hard and you've been through a lot! Sending love! 💗 xx

[Puffle in reply to Chel91]

Thank you Chel91. Sending you all the very best wishes for success with your treatment 🤗