Feeling so sad....

[rachcopey]

Feeling really down at the moment... started prostap injections on 22nd May. Had 2nd one last week. Still in pain and taking 30/500mg co-codamol 4 times a day and oramorph when needed. When does the pain subside?? Really pulling my mood down and crying often. My husband doesn't care and endometriosis is running us. My mother has also said I'm obsessed with endometriosis. I've suffered for 26 years now and had enough of being unhappy - I don't know how to be happy anymore. I can't even remember the last time I laughed. Help.....

[Saammiiee]

I'm just starting to go through some things around Endo and may have it. I've waited years and years and always told people Im convinved I had it but no one seemed to care. I also feel so alone. Im 24 and recently had major heart surgery. I dont know if i can help but if you'd like to talk let me know Sending well wishes your way x

[VictoriaaPlum]

Hi. I totally understand how you are feeling. Endo really takes over your life. I have recently started Prostap and it has already effected my moods. Are you having HRT to support your mood? I suffer from depression also so am having HRT injections to support the hormone imbalance. I was told if the pain didn't subside after 3 months it could be something else causing your problems not Endo? Keep pushing with the doctors to investigate otherwise nothing will happen. It took me ages to get diagnosed and I finally did after trying over 3 different doctors. Take care, please feel free to PM message me. It would be nice to see how you're going as you're a few weeks ahead of me with the same treatment x

[Starry]

Lots of hugs x x x the GNRH side effects do include low mood and depression so don't underestimate it. I came off both it and the Coil 8 weeks ago and am shocked how much my mood has improved in the last 2 or 3 weeks.

Zoladex doesn't work for everyone , you usually get the benefit by month 3 I was told but I gave up after 2 months due to suffering so badly from the side effects.

My hubby told me I was obsessed too, partly you need to research it as so many medical professionals don't have a clue, partly it kind of takes over your life in phases.

Both are completely normal xxxc

I'm trying a lot of diet changes, in particular reduced gluten, wine, dairy ( (through increasing oats and rye bread)and incresed veg and fruit by way of a magimix smoithie blender plus organic everything including natural toiletries to avoid parabens and SLES etc. Every little helps and all that.

Take care of you x x x

[Char11]

I totally understand. After my laparoscopy in february I feel like I'm losing my mind and never stop crying. I must say CBT has really helped me to challenge my thoughts and take each day as it comes. Sending big hugs your way!

[NoEndoInSight]

Hello, so sorry to hear that you are having such tough time at the moment. It can be so difficult for people - even your very closest family and friends - to get their heads around the toll Endo takes on your whole body and your day-to-day life. Do you know if there is a Endometriosis UK support group near to where you live? I know face-to-face support groups are not for everyone, but it sounds like maybe being able to talk to people who know what Endo is like, people you don't have to convince to take you seriously, might be a big comfort? And there might be tea and cake - which is always a bonus when you are feeling down. Also, if you ring the Endometriosis UK helpline ( see endometriosis-uk.org/helpline) they run an advocate scheme where they match you with another member who you can call and chat to one-to-one when things are tough and you need to talk to someone who understands the challenges of living with Endo.

More immediately though, it sounds like you need to contact your prescribing specialist about how low you are feeling. Prostap is a "GnRH Analogue/Agonist". These drugs induce a chemical menopause by suppressing your body's production of oestrogen / progesterone levels and thereby your monthly cycle. For some women Prostap can bring significant relief from cyclic Endometriosis symptoms, but (as with all medications) it can have side effects; as well as a potential loss of bone density, these Prostap can cause mood changes (including low mood).

These side effects are caused by the hypoestrogenic (oestrogen-deficient) state "GnRH Analogues/Agonists" induce, so many specialists prescribe them along with complementary dose of "add-back" HRT is often prescribed alongside them. This HRT dose "adds-back" can take a little bit of fiddling with to get the right balance, but the idea is that "adding back" a little bit of oestrogen and progesterone and can help ease Prostap's side effects without reactivating your underlying Endometriosis.

Every women's experience on these types of hormone treatments is completely unique and it can take a few months to gauge whether something is working for you or not. But in the meantime you should let your specialist and GP know asap that you've started to experience low mood while on Prostap. They should should be able to advise you about "add-back" HRT options, but they should also offer you some emotional support (maybe just a regular GP appointment so you can check in with them about how you are getting on, or maybe some CBT like Starry found helpful).

If your GP is not familiar with Prostap treatment then useful information about it and its side effects can be found here:

medicines.org.uk/emc/medici...

It might be worth printing off and taking a copy along with you if you do decide to see you GP or a CBT therapist - so that they are up to speed with Prostap treatment and its potential side effects so that they can help you get the most out of your treatment.

Sorry that was such a very long reply, but I hope it was helpful. Whatever you decide to do just know that you are not alone.

x X x

[rachcopey]

Thank you all for replying. Yes I'm taking HRT too - tibilone. Seems all treatments get worse before they get better, or that's how I feel. Back on oramorph today as co-codamol just not working. I have an appointment with GP tomorrow thankfully. Feeling teary today and have pains across my back and down my legs xx