PCOS & ENDOMETRIOSIS treatment opinions please.

[VictoriaaPlum]

Hi everyone I wonder if anyone can give me some advice. So my history is that I was diagnosed with Polycystic Ovaries when I was 16. And now at the age of 22 I was also diagnosed is Endo last year. I had a lap to determine my diagnosis which confirmed my fears. I am currently on the Pill which I take back to back for 3 months to minimise my pain. However, the pain has started again since my operation but it is now ten times worse than I ever suffered, especially on my pill free week. Since then i suffer from severe depression, i am on antidepressants and am having therapy. My libido is zero and my relationships are breaking down. As a result I am about to have the artificial menopause injection on Monday, unless I change my mind by then. I am driving myself insane around deciding whether to go for it. I don't know whether I want to pump my system with more hormones and drugs. The side effects etc...

I want children more than anything and feel like everything is against me. Can anyone give me their opinions on what should I do? What are your experiences of the menopause treatment? And generally Endo? Have you had children? How are you managing it?

Thanks in advance.

[NoEndoInSight]

Dear VictoriaaPlum,

I'm so sorry you are having such an awful time at the moment, PCOS and Endo are both such difficult conditions to live with and they can have such an impact up your relationships and quality of life.

The class of drugs prescribed to induce an artificial menopause are called "GnRH Analogues/Agonists". This class of drugs act on the hypothalamic–pituitary–gonadal axis (HPG axis) in the brain to suppress your body's production of oestrogen / progesterone and thereby your monthly cycle. This can bring relief from cyclic Endometriosis symptoms, but (as with all medications) "GnRH Analogues/Agonists" have side effects.

"Mood changes" (including depression) are known side effects of GnRH Analogues/Agonists. Your Endometriosis specialist obviously feels that this treatment would be of benefit to you, but because you already suffer from depression you should be very closely monitored while undergoing treatment so that you can be given appropriate and effective support should you start to feel your mood dipping at all.

Are you also going to be prescribed "add-back" HRT?

Many of the side effects women can experience on these drugs (including mood changes) are caused by the hypoestrogenic (oestrogen-deficient) state "GnRH Analogues/Agonists" induce, which is why so many specialists prescribe them along with complementary dose of "add-back" HRT. The HRT is supposed to "add-back" enough oestrogen to ease some of these drugs' more unpleasant side effects without reactivating the growth of Endometriosis.

I can tell from your post that you are really stressed at the moment and making a decision about whether or not to undergo treatment is always a really tough one. Just know that you are not alone.

Do you know the name of the particular drug you are going to be prescribed by your specialist on Monday? If you do then you can go to a website called Medicines.org.uk and look up the SPC (Special Product Characteristics) of that drug and also the PIL (Patient Information Leaflet. I would recommend that you contact your GP and Specialist tomorrow morning first thing and ask to have a chat with them about how they plan to monitor your treatment if you decide to undergo it given that you are already suffering from depression. Ask them to look up the drug up on Medicines.org.uk (or if you know what the drug is called then print out a copy of the Special Product Characteristics and take it in with you if you have a face-to-face appointment with them).

Your GPs might decide to offer you a regular appointment so that they can check in with you about how you are feeling throughout your treatment. Feeling supported and knowing that you can get any concerns about side effects addressed quickly can be a great comfort in itself.

If you do decide to try this treatment then I'd also recommend that you print out a copy of the Special Product Characteristics on Medicines.org.uk and give it to your therapist too, so that they can offer appropriate emotional support while you undergo treatment. You could also show it to your family and friends so you don't have to find your own words to explain the type of treatments being offered to you and why you are finding the choice whether or not to undergo it so hard.

Every woman's experience on hormone treatments (be it the pill, or these GnRH Analogues) is completely unique. I have undergone this type of treatment twice - one experience was good, one was not good.

The best advice I can offer is that you look up the "Special Product Characteristics" of the drug they want to prescribe to you and talk to your Specialist and GP about any concerns you have before starting treatment and ask them how they will be monitoring your treatment and any potential side effects. Then, if you undergo treatment, and you start to feel you might be experiencing a dip in mood or any other side effects, get in touch with your Specialist and GP straight away and say "I've developed this side effect, what can be done to manage this?". Also be prepared to say "Nope, I've had enough - these side effects are too much to handle" if you ever feel you get to that point. There is nothing wrong with deciding that a treatment is not working for you halfway through and asking to stop it.

Sorry that was such a very long reply, but I hope it's a helpful one. Good luck with whatever you decide.

x X x

[VictoriaaPlum]

Hello. Thankyou for your comment. Its so nice to speak to people who understand. After an agonising weekend of being on my pill free week I decided to go ahead with the artificial menopause. I had the Prostap injection this morning which I was anxious about. But we will see how I go. I am still hurting from my Endo and injection but csnt take the pain anymore so hopefully a few months off with hormone therapy also will help. Fingers crossed. I just hope it won't further effect my chances of having a baby.