Hormonal Treatments

[Cocolil20]

Hi all, I’m new to the forum but have had confirmed endometriosis since 2017 following laparoscopic surgery for cysts. I’ve found out I now have multiple cysts again, 1 of which is almost 20cm!!! Had a very rushed appointment with an endometriosis consultant on the nhs last week after having trans vaginal u/s and Mri and he says my only option is hysterectomy and whilst waiting I should start hormone injections too….. there wasn’t time to ask any more questions about this specifically and he just wants me to let his secretary know what I want to do but wondered if anyone could share what hormone injection treatments are available for endometriosis and side effects etc. I am 44, peri menopausal and not looking to go ahead with the hysterectomy as i feel it’s far too drastic for my personal circumstances even though I am in quite a bit of pain during period and mid cycle with extreme fatigue too. I just feel hysterectomy isn’t going to solve the problem and will actually leave me with a different set of problems ie an instant surgical menopause, possible surgery complications and the endo can come back !!!! I’m really not sure what to do but hopefully someone may have some pointers please? Thanks you so much

[CupcakeL]

Heya,

They may of been referring to GnRH analogues , which are a chemical menopause. It’s an injection which from my understanding shuts down your natural hormones and therefore puts the body in a menopause state, as it’s chemically induce it’s not permanent.

I’ve been having them for a year now, the drug mine is, is Decapeptyl and I have an injection every 4 weeks, I started taking Tibolone combined HRT after 6 months to ease side effects (insomnia, blurred vision & anxiety) and protect my bones.

I’m a very big fan of this treatment, as for me it’s gave me my life back. I’m pain free, have energy, know my symptoms are endo related, but also feel like myself still.

I’m almost 32 and have no children so I’m just on the waitlist for another laparoscopy. But I have read on here a few ladies have tried these injections before making a decision on a hysterectomy as it’s a good indication as to whether it would help.

I know not everyone’s experience is the same, but mine has been positive on this treatment & my journey has been one of trialing different treatments .

Best of luck Xx

[Cocolil20 in reply to CupcakeL]

hey there, this is very helpful thank you so much for taking the time to reply. I’m really pleased to know it is helping you this is great news so definitely something for me to consider potentially. Good luck with everything and hopefully you won’t have to wait too long for your laparoscopy. Take care and all the best.

[Pinkmice]

Hi

Be very careful - yes they are referring to injections to stop the hormones

But it has to be referred so that your body /your general practise/plus the Endo clinc

is aware of what - is happening!

So types may not suit - Chemical menopause is painful - so natural products included

into your diet help.

Hope this gives you ,some background- before anything else - as big impact

Take care,stay safe

[Cocolil20 in reply to Pinkmice]

Hi there, thank you so much for taking the time to respond. These are my exact concerns hence why I don’t want to rush into any decisions surgery or hormone treatment wise without understanding what they are etc like you say it will have a big impact and I’m not entirely sure which way to go with everything. Agreed on the natural side it’s definitely a holistic approach that I’m trying to take here as it’s clear to me now, diet (gluten free, dairy free, minimal sugar etc) exercise, managing stress, prioritising sleep and vitamin supplementation all play a big part in the picture. Its just hard when you are battling fatigue and all the other myriad of symptoms that come with having endo that make it difficult to be consistent with everything…It’s all very overwhelming but I’m hopeful with each step I can get closer to better managing this awful condition. Hope you are keeping well and thank you so much again for this great advice. Take care

[Femme_like_you]

Hi there, completely understand your hesitation about hysterectomy, as I felt the same way myself.

My period pain got worse since I had my left ovary removed, so my consultant prescribed progesterone pills. Periods got lighter immediately, I had spotting for six months and now I don’t have any bleeds or pain at all. It’s called Diegonest or Zalkya. It may be worth asking your consultant about it, as it’s helped me a lot.

Good luck with everything.

[Cocolil20 in reply to Femme_like_you]

Hi there, thank you so much for taking the time to respond I really appreciate it. What a wonderful community on here so wish I had known about it years ago . This information is extremely helpful thank you again. Glad to hear all is going well for you. Take care

[Yellowfellow]

I haven't got as far as injections but I had an ovarian cyst removed (including ovary) and second laparoscopy to remove endometriosis last year. I'm not a fan of hormonal treatment (they wanted me to go back on the pill) and so far my symptoms have been hugely improved following using the fodmap diet. I also do a lot for mental wellbeing, I'm 39 and think I'm experiencing some peri-menopausal symptoms too, but I really notice the difference my diet and stress has on my symptoms. So frustrating when you don't get the time to feel heard or understood, I have found the forum and endo UK group on Facebook SO helpful, hours of research are great, just don't overdo it because it can become obsessive! Hope this helps and good luck, sometimes it's just nice to know you're not alone 💛

[Yellowfellow]

sorry, I should highlight the symptoms did improve from diet a lot before the surgery, so together with surgical removal and continuing diet there has been a huge improvement since

[Cocolil20 in reply to Yellowfellow]

that’s great to know thank you so much….hopefully you just saw my other post a moment ago in response to your initial message. Thank you again for your help here ….

[Cocolil20]

aw this reply has made me emotional ❤️ The power of being heard and not feeling so alone with all this is very moving…I definitely think perimenopause is making me super emotional these days!!! it’s sad to hear of some many others who are struggling but There are lots of positive examples though too which is really encouraging. Totally hear you on not obsessing over everything though, it’s easy to do that but can leave you more stressed!!! Great advice on the fodmap I must look into this. Glad to hear you are on top of your symptoms. Thank you so much for taking the time to reply. Thank you also to everyone for sharing their journey here in response to my post. Good luck and take care 👍

[Yellowfellow]

Community is everything when we are struggling. I did a pain management course (referred by my osteopath) it was free and helped me so much with the acceptance and acknowledgement of the pain. I discovered the mind is very powerful in terms of physical condition, but it also helped me identify patterns and triggers, I would definitely recommend it. I may still have the option to 'recommend a friend' for the free trial I did if you would like it, feel free to pm me xx

[Cocolil20 in reply to Yellowfellow]

This sounds great thank you. I will message you 👍

[Yellowfellow]

also, I found it too overwhelming to go fully into fodmap, I just cut wheat, dairy and red meat, and tried to reduce sugar, alcohol and caffeine. Now I have a little bit of cheese now and then and a small amounts of wheat, like breadcrumbs on a chicken fillet or something now and then, not worth creating another huge stress. A few small changes over time make a difference.

[Cocolil20 in reply to Yellowfellow]

Yes I’m doing something similar but not very consistently which is the problem but will definitely try to focus more on this…. I’m also trying a new set of vitamins, after having a free mini consultation with a nutritionist who advised me to take only natural vitamins and not the synthetic ones as I had been…. These do seem to be helping me actually after only 4 weeks so hopefully all these little things combined will start to make a difference. Like everyone seems to say on here, it’s trial and error and very much unique to the individual in terms of what works for me you…. Having the perspectives of others going through the same thing is immensely reassuring ❤️ Thank you again. Take care

[Yellowfellow]

Oh yes, I did something similar with a functional medicine practitioner (who used to be a Doctor) and the vitamins I take now definitely help. Well done, keep going

[Starry1977]

hi, I’m n a similar position. I have stage 4 endo. Had a lap in may to remove an endometrioma and that’s when they found the severity of my condition. I’ve had an mri in July and I’ve sever scarring plus endo near rectum and already another ovarian cyst growing. My options are hormone, chemical menopause or full hysterectomy. I’m 45 and don’t feel ready to go into menopause, it ready upsets me thinking about it so I’m re trying the mini pill. I tried it for just under 3 mths after my lap but I bled a lot so came off it. I’ve had 2 periods since, first felt fine, but I came on last Tuesday and I’m still spotting and it feels like my ovaries being ripped out today and I’ve had constant back ache and pressure in my bum. So I think maybe the pill might’ve helped even tho I bled so I’m retrying but going to give it longer as I’m terrified of a hysterectomy.

[IB15 in reply to Starry1977]

Cerelle/ Desogestrel seems to be the best pill to take for endo in my experience (I'm also stage 4)! It's the progesterone only pill and halts ovulation as well as periods. I do spot on it but you can take x2 a day which helps with that, and after 6 months on it things settle down a bit! I feel low on it sometimes and there are other symptoms which aren't fantastic but honestly it's allowed me to work again so it's has been the best option for me personally. It might be worth giving it a go for a bit to see if that helps!

Sending you love xx

[Starry1977 in reply to IB15]

thanks. I've got noriday atm which is norethistone. Do you think it's worth trying that instead.

[IB15 in reply to Starry1977]

It's what my consultant recommended, it's definitely worth asking your GP or gynae about it as an option! It's different for everyone of course so please bear that in mind! But it has made such a difference for me, I had to stick with it to notice a difference though. The pill symptoms are much more bearable than the endo ones at the moment. It's also comforting to know I can stop taking it at any time and can up or reduce my dosage unlike the coil. x

[Starry1977 in reply to IB15]

thanks.i restarted noriday yesterday so I'll see how that goes but if not I'll ask gp to prescribe the other one. I'll try anythingto avoida hysterectomy

[IB15 in reply to Starry1977]

Hope it goes well for you! I know exactly what you mean, it's trial and error but hopefully you an find something that helps x

[Cocolil20 in reply to Starry1977]

Hi there thanks for replying to my post. I’m so sorry to hear you are in a similar position. I hope you can start to get some relief asap from your medication. Like you I’m really not on board with a hysterectomy at this point but maybe I will have to be in the future. It seems there are a fair amount of positive comments on the forum from people who’ve had a hysterectomy, but I’ve also come across others that haven’t found it to be a positive step for them. It’s such a hard decision and I’m worried that it might be better to elect to have this done, rather than run the risk of it becoming an emergency surgery down the line, as I hear this can happen too in some cases???? Guess you just have to take one step at a time and keep trying different things that you are comfortable with… it’s just so hard with the long nhs wait times at the moment to get access to those who have the time to answer your questions sooner rather than later. All the best best to you and thanks again for sharing and giving advice ❤️

[Bluebeau]

hi thanks for sharing your experiences. I too have been offered a hysterectomy or a second laporoscopy with removal of right ovary. I am very apprehensive about having a hysterectomy and personally feel it’s too much to go through at the moment. I’ve never felt so confused or lost about a decision to be honest. X

[Cocolil20]

Hi there, I’m so very sorry to hear you are in a similar position. I am so confused too, so much so, I’ve not done anything yet in terms of treatment or surgery decisions. It was such a shock hearing the outcome and such a rushed experience with the nhs gynaecologist that I just need time to process everything and educate myself as much as possible without overwhelming myself (!!!) perhaps once we give ourselves the space to understand more about our options and look at the pros and cons of each, the step we should take will become apparent …. I know it’s hard waiting to make these decisions when you are in pain and confused etc but I have found reducing my stress as much as I can, getting out in nature, trying some dietary changes and taking a new set of vitamins targeted at endometriosis and also peri menopause support are personally all little things that are helping to give me some relief in the meantime… wishing you all the very best and thank you for sharing your journey. Take care xxx