Does anyone have advice pls?: I have severe... - Endometriosis UK

Endometriosis UK

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Does anyone have advice pls?

Bagpuss1848 profile image
10 Replies

I have severe endo which I have been managing best I can with pain killers and by taking the pill to try and get my periods under control. It’s not been perfect but it’s manageable . I was offered a hysterectomy but because of bowel involvement they couldn’t guarantee that I wouldn’t get long term damage and as I was just over 40 at the time I opted to try and get by until menopause…..

Im 49 now and earlier this year I made a big mistake when I decided to stop taking the pill (due to some of its unwanted side effects….mood swings,headaches,dizziness…that sort of thing).my problem is the volume of blood loss on a period - soaking through triple protection in less than 30minutes for 2 days each month. I was wondering if I could just start the pill again? Or would something like tranexamic acid help?other ideas? Getting a GP appt right now is impossible and Im not under a consultant as the one who diagnosed me was at a private hospital and she has since retired. Does anyone have any words of wisdom?I’d be really grateful…I’m not even sure what to ask the GP for if I score an online consultation. Im pretty sure that at 49 they won’t be keen to let me have the combined pill again?thanks for reading a long post x

10 Replies
Pb1970 profile image
Pb1970

Hi there I was just wondering if you have thought of trying the mirena coil ? I had first one fitted nearly 10 years ago it stopped the bleeding almost immediately maybe I've been lucky ( I know some ladies have had bad experiences with it) but it had been a god send to me I can't say a bad thing about it .. it helped with the pain and my mood swings 🙃 ... but 10 years on I'm going for a full hysterectomy I've already had my tubes removed and I'm on zoladex now but I hope the hysterectomy will work I hoped I could get to menopause x

Bagpuss1848 profile image
Bagpuss1848 in reply to Pb1970

Thanks for your reply Pb1970. I was offered the coil on the morning of my last lap. I didn’t feel able to make an on the spot decision as endo was so new to me back then. Thinking about it though and I’m not sure why but if I’m honest I just can’t stand the thought of the whole coil thing - maybe it is because I couldn’t just remove it if I decided I’d had enough! I think I need t feel in control of this thing as so much feels beyond my control (if that makes sense)

How did you find zoladex? This was an option for me too but I scared myself silly by reading about so many who had bad experiences and, with a daughter with full-on additional needs, this just wasn’t an option for me at the time. I guess I would need a fresh referral to get it now but maybe that is a thought…Hate the fact that so many of the treatments have nasty side effects, as if endo isn’t horrid enough anyway.

Pb1970 profile image
Pb1970 in reply to Bagpuss1848

Zoladex has been OK I've been on it 2 years nearly ... was due to have surgery just before covid happened... once again I've had a good experience only had mild hot flushes 😳 they are bearable but the last few months it seems to wear off about a week before I'm due next one then the pain starts it's not as bad as without Zoladex the actual injection isn't the most pleasant thing but it's a small sacrifice to be nearly pain free x

EndoSuckss profile image
EndoSuckss

Hi! Like the comment above, I have a mirena coil and haven't had a period since! It's been a relief from that point of view as the bleeding was getting beyond control!

I understand your comment above that you don't like the idea of the coil because you can't remove it yourself, but it can easily be removed by a nurse at the up surgery. I tried it as a last option before zoladex as, like you, the side effects of that scare me!

Would defo recommend the coil based on my experience!

Noodle31 profile image
Noodle31

Have you tried the mini pill? The combined pill contains estrogen, so it isn't always a great bet for those of us with endo. The mini pill (such as desogestrel) is an alternative which is recommended for estrogen-sensitive people and women who are over 35.

FazzyB profile image
FazzyB

Hello, Sorry to hear what you are going through

I have stage 4 endro too and have had same issues like you have described extreme bleeding and flooding. I am on the mirina coil it works great,

Also I have now added Zoladex to the HRT treatment as I will be at having a hysterectomy.

I'm just under 40 and have endro and adenomyosis with several fibroids inside the uterus.

All of these are having a bad impact so personally I feel a hysterectomy is the best route for me. Just cause of covid there is over a 100 patients waiting to have the same procedure as me.

So currently I am thinking to go private and maybe this might be my best option.

Good luck but do request from your GP to have a Mirena coil. You will see the benefits within the first few months and to follow it will reduce the bleeding massively.

Good luck and take care 🙂 💜

Lilyjack profile image
Lilyjack

Unlike others I couldn’t get away with the marina, prostap, Depo or combined pill (which I took successfully for 15 years prior to having children)Like you I have 2 days of flooding which is obviously debilitating and I have 2 young children (6&4) so am putting off a hysterectomy hopefully for a year or two until my kids are more self sufficient, plus as I also have bowel concerns I’m wary.

My last gynaecologist appointment she told me to try mini pill so I’m waiting for my next period to start taking those.

I know you feel a gps appointment is impossible it is for us here too but you need to try

Dogmad6 profile image
Dogmad6

If you were on the pill only last year and it helped, can't see why they wouldn't just let you carry on a bit longer. Would it be worth asking? You could just tell them your endometriosis symptoms have returned since stopping and see what they say. Good luck xx

Bagpuss1848 profile image
Bagpuss1848

Thanks everyone! I really appreciate the replies and the time you have taken to reply to me.

Missy100 profile image
Missy100

Hi Bagpuss.

Although I've tried more than once, I can not get on with progesterone.(birth control) due to the side effects.

I was experiencing awful bleeding a few years ago to the point where bleeding and clots were going through products so quickly I was resorting to sitting on large, folded over towels (at home). I also bled more often than I didn't, without regular cycles. My GP prescribed Tranexamic Acid. I inititially didn't think it was going to work but within two months my periods started a regular cycle. I now bleed an average of five days, and the amount now is more in line with what a 'standard' blood flow should be. As I bled so frequently (and heavily) I do take Tranexamic Acid daily rather than just certain days of my cycle. It has made a massive difference to this aspect of my symptoms. I occassionally have a heavier flow, but it is not uncommon for women to experience this and it is no where near the sort of heavy flow I use to have. I would suggest asking your GP, at the same time as discussing Tranexamic Acid if you should consider taking anything like Omprezole to protect you against potential side effects from regular long term use of the medication, if prescribed. I also take other medications including Mefenamic Acid and I'm not sure if my need for the Omeprazole would still exist on Tranexamic Acid only, but your GP should be able to help answer any questions or concerns if you decide to explore this with them.

Are you aware that women still experience symptoms of endometriosis after menopause, including even after a full hysterectomy? You may find the library of information offered by Nancy Nook Endometriosis helpful. They have all kinds of online reading sources and links to videos. Via FB they also share details of upcoming online presentations with endometriosis professionals, (sometimes with Q&A) and more. They also have a list of endometriosis specialists divided into countries/areas that you may find helpful as it is based on positive feedback by women who have received endo treatment through them and all have all been checked to see if they offer excision treatment and their views on following the most recent and up to date treatment. I've found the Facebook page the easiest to navigate and if you struggle to find the information you seek you can ask for help locating it, however they do also have a web page if you prefer.

There is an alarming amount of out dated and incorrect information being provided to patients because the doctors/consultants are not adequately educated, trained, regulated or experienced in endometriosis to be able to provide the most effective treatment and care all sufferers need and deserve. I say this because it is worth looking into what little training and/or experience is typically actually required to be classed as an endo specialist. Also it is worth checking into what it really means to be a BSGE centre or a bsge accredited consultant (which are two different things). I recently found out information that shocked me as it is not made transparent. I suggest that if you do seek out a consultant that you specifically ask, before committing to their care (or asking for a referral to the practice), the average number of endometriosis patients they see in a year, their beliefs on the treatment of Endo, if they have specialists in staff to help with Endo that has spread to other areas such as the bowel and/ bladder (for example), as well as their treatment success rate. Endo doesn't currently have a cure but it can be treated to minimise it's impact. The current 'gold standard' treatment is excision surgery, if possible, rather than ablation (sort of the difference between digging a weed and its roots out vs cutting the weed off at the ground level and leaving the root behind). Endo can continue to grow and spread even while on medication and even after starting menopause. I am not suggesting excision is a cure, for there is no cure for endometriosis. New growths can continue to appear. As for non surgery treatments, they can help ease symptoms for some sufferers, but there is no one option fits everyone. They are not "magic cures', and they don't eliminate the current growth. They don't make endometriosis disaplear. They also all have possible side effects that vary.

Not all of this information directly addresses only bleeding, and I want to stress I am not trying to push you in any specific direction. However, some of it may be information you are not aware of. You mentioned your prior consultant is no longer available and depending how long it has been, you may find there have been treatment updates.

I truly hope you find what works best for you, as quickly and easily as possible and that that you find something of use in this reply

Good luck

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