Not sure what to do....

[fed_up_of_endo]

Advice, personal experiences, and comments most welcome.... Apologies for the long post, but it covers my story so far to provide context.

So.... probably the same story as many of you here: I have probably had endo for a very very long time, frequent visits to doctors re bleeding and pain etc. to be told "it's just your period, have you taken some paracetamol?". I persisted and the offer of painkillers just increased to a point that they offered me oramorph (not practical as a lone parent).

Fast forward to 2020, where I had horrendous and constant pain, along with a host of other problems. NHS wasn;t doing much so I paid for a private scan, only to find a 10cm endometrioma on my left ovary. GP put me on a waiting list.... In the meantime I managed to see a private consultant who almost immediately diagnosed me with endometriosis. I booked in for a see-and-treat lap to confirm and excise - turns out I was riddled.

Post op (early 2021), felt like the world had suddenly become technicolour, life was like a Disney movie and I actually realised how awful my day-to-day existence had been.... I was cured!!! 🙌 Well, for a while at least.

Unfortunately, the endo came back (booo 👎). I went to see the consultant again who prescribed me Dienogest. This helped a little but was nowhere near comparable to the post-lap life.

Since then I have moved to an area where they are not able to prescribe the Dienogest, so was sent to gynae to look at other options.

As of December 2023, I have been put on GnRH (Triptorelin) with add back (Tibolone) and frankly I am wondering where this merry-go-round of feeling dreadful stops?! 🤯

My day-to-day quality of life is not good at all. I have had to leave my job, my social life is non-existent, my love life.... welll......... ☠️

Granted, the extreme pain is less but low-level pain still very much present, find I am snappy, sooooo extremely tired, not feeling myself at all, and wondering what the hell am I am doing to myself?!

Am I better off just dealing with the day to day endo symptoms and flare ups? Because at least I knew myself despite the crippling pain, or do I continue down this route on the waiting list for the hysterectomy and seal this in as my fate at 35 years old? I have never felt more hopeless about my health. I am such a strong woman, but this is truly breaking me.

If anybody has been in this situation, please please reach out. I know I am not alone.

[AllthatGlitters]

Hello I have been at breaking point many times, due to my health and what has happened to me because of my illness. I have adeno and endo as well as other health conditions. I no longer work, been treated unfairly and discriminated against and not believed by employers although I have all the evidence in the world. My life is totally different now to what is use to be 10 years ago. I try and take it a day at a time, some days are good and others are terrible. This is my life now and it’s taken a lot of energy from me to get use to the new me, I have also had CBT to help me cope.

I see you mentioned you have endometriosis and wondering about a hysterectomy, my understanding is that it won’t take away your condition, it’s only effective if you have adenomyosis as it’s taking the womb out.

Anyway I had to respond so you know you are not alone ……. We are all warriors fighting a daily battle than no one else sees xx

[fed_up_of_endo in reply to AllthatGlitters]

AllthatGlitters - thank you.

I am sorry to hear you are suffering also, especially with work and the discrimination.

I understand that a hysterectomy isn't necessarily a fix, but I had hoped that it would make things a little easier, having been on the GnRH has made me really doubt how effective it would be though.

Honestly, I don't know if I have adenomyosis (not diagnosed at least), but consultants have agreed to a full excision of uterus and ovaries so I assume they believe that there would be some benefit to agree to it? It's all just so confusing to know what is the right course of treatment, or if I am better off with none and just managing symptoms.

xx

[AllthatGlitters in reply to fed_up_of_endo]

I’m on that predicament too, hysterectomy or not, been told it can cause other problems. I just don’t know. I don’t feel ready for one. I was on decepeptyl and it was horrendous. Seems like not a lot works x

[fed_up_of_endo in reply to AllthatGlitters]

I have absolutely no desire to have a uterus anymore, so not something I would miss having, however I don't think I want to deal with it if every day is going to be like this - especially if it is not going to alleviate the pain (as the injection is supposed to). I am on the same medication Decepeptyl (aka Triptorelin) and it is really doing a number on me.

I feel like a lab rat with the "try this and see if it helps", it'd be nice to just have something that works without all of the horrid side-effects x

[Sunset-lady]

You've been thrown into chemical menopause because of the injection and Tibolone is not really enough addback HRT which is why you have many symptoms of menopause. You're snappy because you don't have enough hormones. Menopause is tough and complex with over 34 different symptoms. You just feel rotten and out of control. You could do two things - get different HRT. If you're on this for endometriosis not adenomyosis then you can take utrogestan (natural progesterone) and estrogen gel. This should alleviate the side effects but not allow the pain to return.

Alongside this, I would tackle your diet (apologies if you are already doing this) cut out gluten, ultra processed goods and alcohol. Don't be tempted to buy gluten free stuff as it's full of rubbish. No alcohol will make a huge difference especially after 4 months which is when I really saw a change. Then I'd introduce more exercise. I know it's hard when you are in pain, but even walking helps endo. Finally, add supplements like collagen and B vits to your diet. Do pilates or yoga for core,( and to help your bones which this injection harms)and get plenty of quality sleep (take magnesium glycinate for sleep). If you view the injection as only one piece of the jigsaw then you can work on the rest of the things you need to feel better. I hope that helps. Xxx

[fed_up_of_endo in reply to Sunset-lady]

Thank you for your reply. I appreciate you sharing the tips. I was initially taking the tibolone (2.5mg) daily, which did deal with a lot of the menopause symptoms that bothered me, but then threw up additional symptoms which I was unhappy with (particuarly the extremely low mood and snappiness). So, I stopped it for a short while; not snappy anymore but low mood persists. I'm now trying half a tibolone tablet to try and find a balance between the chemical menopause and tibolone side effects.

Might be worth noting that I have never responded well to medical changes in hormones (depo, implanon, pill, merina). Always played havoc with ny body and mind. I have a very happy status quo of my "normal" hormones as far as my mental health goes.

I already take vitamin B and D, I don't drink (haven't done for approx 15 years other than on very rare occasions) I do walk when I feel up to it, along with yoga where I am able.

As for the gluten free diet - it's something I've considered, but I am not sure a dietary change would be sensible for me right now, maybe something to trial when I'm feeling a bit more human.

The problem is, I am stuck in the decision between continuing with this, and then looking to balance all of the side effects with more medication (I'm not sure I want to be on a cocktail of medicines)

OR stopping the triptorelin & tibolone completely and going back to analgesic management of my endometriosis symptoms. I feel like I'm chosing between my physical and mental health here.

Currently, I'm inclined to stop the medication as at least I did have "good" days which I don't seem to be having at all lately.

X

[Smiley2022 in reply to fed_up_of_endo]

Hi I just came across your post and thought omg this woman sounds exactly like myself

I’ve tried lots of things in the past depot injection , pop pills , , combined pill all of these made me really depressed , so came off them.

I then tried Decapeptyl for 5 months , had awful side effects , tried Tibolone for one month felt even worse, eventually came off the injections .

I now have the mirena ( 7 months in) and although the pain is a lot better , I have so many side effects I can’t stand feeling like like this anymore and my mood has got a lot worse yet again

I’ve always thought I maybe progesterone intolerant , because it makes me mood far worse when I take it

I’ve even tried Utrogestan and that’s body identical , but yet again my mood suffered

I’ve asked for a hysterectomy now as I’ve had enough of these cocktail of medicines

X

[fed_up_of_endo in reply to Smiley2022]

Thanks Smiley - sorry to hear you are in the same position, but grateful that we are not alone in this.

I am due my next GnRH injection on Thursday, but the last few months it's played havoc with my health (general and mental) so going to opt out of it and see if there are any other alternatives they can suggest - how did you find coming off it all?

The Mirena was a nightmare for me too, had it years ago and only lasted a few months before I had to have it taken out. Firm believer that the hormonal contraceptive/endo treatments are not right for so so many women, but at least we have tried eh?

I do worry about the hysterectomy option as I am scared it'll present the same side effects as the GnRH? Especially given that we would likely be expected to take HRT meaning more side effects? It's a minefield, seems we are damned if we do, damned if we don't.

Planning an activist/protest approach next, might super-glue myself to something until they agree to offer us something other than stupid hormonal treatments! (satire)

x

[Smiley2022 in reply to fed_up_of_endo]

Hi thanks for your reply

I was fine coming off the injections and didn’t have a period for about 4 months 👍

The way I see it is we are only masking the endo symptoms with grnh injections / mirena etc which also bring there own side effects

At least with a hysterectomy everything is gone and we only have to put up with hrt side effects afterwards

I’m with you on supergluing ourselves to something until they give us better alternatives 👍👍🤣🤣🤣

Tina x

[fed_up_of_endo in reply to Smiley2022]

No period for a while after this sounds like a dream, I was worried it'd come back with a vengeance soon after I stop the injections!

As far as I am aware, Dienogest has been proven to shrink the endo lesions, but again the side effects of that are very real (but nowhere near as severe in my experience), only problem is, it's a postcode lottery kind of drug!

I am honestly exhausted with trying different things. There has to be something better surely?! All I want to do is live a normal life....

The more I am looking into it, and knowledge of my past lap excision - I am wondering how far the hysterectomy will actually go to alleviate symptoms? Thinking I may be better off treating myself like a car and booking in for an annual service/MOT to have regular excision until it gives up and leaves me alone.

Hope you're managing ok, x

[Smiley2022 in reply to fed_up_of_endo]

My sister had endometriosis , she had a hysterectomy at age 42

She’s been fine ever since and only has to use estrogen patches every day now , so this is giving me hope

I know it’s a big operation but I don’t see Any other alternative

I’m 49 so near to menopause I guess anyway so il just go through it sooner than later lol 🤣

I like the idea of having a lap every few years

Not sure how many you’re allowed to have ? 🤣

I’ve been having time of work for a few days every month when I’m at my worse , so my sickness record is bad 😡

I’m not doing good feel like my life is on hold , I’m not really living I’m surviving 😢 x

[Sunset-lady]

I've said those words "I'm choosing between my mental and physical health" a thousand times these last few years x good luck x

[Swa_24]

Sending an abundance of strength and admiration your way, dear warrior. The journey of 'Endo' is known only to those who traverse its challenges. May healing find its way to you swiftly. Sending love and warm wishes for brighter days ahead. xoxo

[Endolemon]

hi 🌷I have had hysterectomy 5 weeks ago, and felt very well for short time . But my surgeon prescribed Prostap injections for 6 months and I feel depressed and fatigued now.

I had it before with Prostap. Waiting for check up for HRT discussion. Think I will ask to stop Prostap because I need go back to work somehow 💛

[Smiley2022 in reply to Endolemon]

Hi love your member name by the way 👍😀 Glad to hear you were okay for a while after your hysterectomy , why did your surgeon put you on Prostap afterwards? X

[Endolemon in reply to Smiley2022]

I have asked him twice and forgot again now 🤣memory problems. Think it might shrink Endo left 💛

[Smiley2022 in reply to Endolemon]

Oh I see ..it’s because you have some endo left !!!

Oh god I hope I don’t have any left after my hysterectomy 😡

Never thought about that before

X

[Endolemon in reply to Smiley2022]

I have seen some photos in internet, it could be even tiny spots. So think it is not possible to cut them all x

[Smiley2022 in reply to Endolemon]

I guess you could come off the injections and see how you feel without them 🤞🤞 x

[Endolemon in reply to Smiley2022]

Yes, I had one single for 3 months, so need to wait 😊

[Smiley2022 in reply to Endolemon]

Oh that’s a bummer 😡

I assumed you were having the monthly injections

See how you feel at the end of the 3 months then come off them then if you feel bad still

I’m 49 so I’m guessing I’m prob close to menopause anyway , so might aswell have hysterectomy

Tina x

[fed_up_of_endo in reply to Endolemon]

Do you think that the injections were the cause of feeling rubbish then rather than the hysterectomy itself? Do you still have ovaries (odd question to ask a stranger on the internet 🤔) I was hoping to whip it all out, have a little endo excision and be right as rain, but the more I am learning, the more I am doubting that would be my reality.... x

[Endolemon in reply to fed_up_of_endo]

I hope it is side effect of injection.

Surgeon advised me to remove everything- uterus, ovaries and cervix. He said if you keep ovaries that more likely you will come for operation again but it will be more difficult to operate because adhesions from the first operation. But I am 47, so was close to menopause anyway.

I was in horrible pain last periods and anemic so I just wanted to rid off everything. No pain now 😊 Hemoglobin was normal straight after the operation.

He is not going into much details what areas was excised from Endo, so I think to ask for official surgical report from hospital x

[fed_up_of_endo in reply to Endolemon]

That is great to hear - I am glad you are rid of the pain, must be such a relief?

I would be aiming for the same operation wise if I chose to have it, get rid of the lot and be done with it! I am 35, so a little further away from the menopause but feeling so incredibly conflicted.

It's unfortunate that you aren't given more information post surgery, it's good to know and see what has been done. Fingers crossed you get the report, stay pain free, and find life easier once clear of the injections. x

[AllHailTheQueen]

I am sorry you’re also struggling with endometriosis pain.

I had a hysterectomy when I was 35, in addition to having my appendix removed because it was also covered in endo. Post hysterectomy my quality of life drastically improved. My hysterectomy was approximately 3 years ago now, I still have one ovary (left side) in the last 10 months I have frequently been in debilitating pain all stemming from the right side of my body.

All of this to say, I have never regretted having a hysterectomy but also keep in mind it is not a cure to endometriosis. I do suspect I will be scheduling an additional surgery soon as I have more abdominal adhesions.

Best of luck to you! I hope you’re able to find relief