Zoladex not working

[Aimz99]

Hi, I have been recently diagnosed with Endo after suffering all of my life. This year the pain has become more than my cycle and have ended up in A and E many times due to the pain in my lower abdomen, pelvis, chest and back.

My Endo specialist has written on my notes that if the Zoladex doesn't work then my problem is not gynae related. My hair is falling out, I have gained and retain weight, crying constantly and have felt suicidal at times and so I will not my next round of Zoladex as I still have pain and cannot cope with the side effects.

I am on the waiting list for a laparoscopy but the specialist was not keen for surgery but I need to know what is going on inside my body.

All my scans come back clear but the pain is awful and it is clear that it Endo due to pain and symptoms matching up with my cycle.

Does anyone have any advice for me?

I am going to come off Zoladex and HRT and let my body be natural until I have my operation.

I feel like the medical specialists just want to palm you off to different departments and they don't take you seriously.

I don't know what to do but there is a specialist in America who looks like he knows all about Endo but I cannot afford to get out there.

Does anyone know of a good specialist in the UK?

I do not want surgeons to open me up if they are not educated on Endo and know what they are properly looking for due to the lack of research.

Thank you in advance for any help or advice anyone has.

Aimee xxx

[Qanngoth]

Hi Aimz99

Sorry that you are having to go through this. I was on prostab (similar to zoladex) for just over 2 years. However, for me it was the add back hrt that caused me most problems as it affects my mental health.

Have a look at the follow website to see where your nearest endo specialist is. Your GP might be able to help with a referral or ask for a second opinion!

bsge.org.uk/centre/category...

[Aimz99 in reply to Qanngoth]

Thank you so much for your reply and I'm sorry you are having trouble too! I am definitely going to ask for a second opinion. Thank you and I wish you the best xxxx

[635703]

hello Aimee,

Firstly, you’re not alone in this. Many of us have been through similar things, myself included. I have been on the struggle bus 18 years now. OMG 😦 that just hit me. Not all of it has been diabolical but quite a chunk of it has.

(You may know this).Secondly, in The UK there are a number of Hospitals that are Accredited Endo Centres. This means they have very experienced Drs that have dealt with difficult and complex cases. In each Centre there are Consultants who are skilled and experienced at Laparoscopic surgery. For example my Consultant is listed as a Master in laparoscopic surgery. You may know this as you are seeing an Endo Specialist. So forgive me, not too well either here.

bsge.org.uk/centre/category...

This link will take you to The BGSE website where Surgeons are listed and Endo Centres are listed too. In the NHS every patient has THE RIGHT TO CHOOSE. This means you can ask your GP to refer you a Specific Endo Centre and to see a chosen Consultant Endometriosis Surgeon by name. People can sometimes pay to have a private Consultation and then be moved onto their NHS waiting list. I don’t know if this still works, but many years ago this was the case. You can ring their private clinic and ask how much it would cost to see a specific Dr for a single Consultation. Or you can exercise your right to choose, it’s free.

I have been on Zolodex on 3 separate occasions. On it now. So My Endo Specialist prescribed Tibilone which is a tablet HRT and it’s used to protect your bones. Also, it can counteract zolodex side effects. This helped loads with my side effects from zolodex. Now in perimenopause and have a HRT patch as I need different amounts of hormones. That’s my first question to ask your Endo Specialist “will tibilone help me with zolodex side effects? If the Endo Specialist hasn’t done this, then they can’t say your issues are not Gyne related and fob you off to another department in my opinion.

Pains in the chest and back…well we can have thorasic Endo. You can ask the Endo Specialist “have you considered that I may have Endo in my lungs”? (Thorasic Endo).

Thirdly, you can ask your Endo Specialist to refer you for a second opinion to another Endo Specialist? You clearly are finding what they are saying hard to believe. Make that Dr really hear what you are saying.

There are some Consultants out there who sadly don’t do their job properly and it can cause devastation in our lives. You need to understand their reasons for wanting to do and not do something.

Ask them to explain. It will help to soothe you. It’s hard when you feel so unwell and we often have mh struggles too. I have depression and anxiety with the Chronic and severe pelvic pain. Many of us do. So appointments can be very traumatic. We get our pain and symptoms minimised when they have a debilitating impact. I can’t work currently.

The Lap gives them an ability to look for the Endo as it loves to play hide and seek as you probably know and removal by excision (cutting it out) which is now considered the best way to remove it. Ablation has more risk of adhesions. (Burning with a laser). Which is my personal experience in my own Gyne case. Apologies, as you may know this already.

I think you’re right because you know your own body. The Dr should be discussing things with you as an equal, explaining medical terminology, going at a pace you can cope with, speaking to you with kindness and compassion. Making you feel hopeful because it’s their job to manage our symptoms.

In My NHS Trust they send me a text after my appointment and I score the Consultant and have an opportunity to tell the real truth on how it went. That Consultant gets feedback based on what we say on that questionnaire. I find this comforting that they’re accountable and want to do their job and do it to the best of their ability.

Finally, seeing a Consultant in America: it can cause problems with any aftercare. Remember they love doing stuff to help, speak to you very well, have pretty hospitals, but they also are stupidly expensive. Legally I question what would happen if they were to do it wrong, cause more damage. How are they governed? Here we have The NHS Trust, NHS England, The BMA, a familiar legal system. It’s quite a litigious culture in The US and you can be screwed over easily. To sue them would be impossible unless you’re a millionaire. Unless you are rich, I would not bother. But that’s only my thoughts.

Oftentimes, when we are desperate to feel well, we can be vulnerable to exploitation as we let our guard down. We will literally try and do everything we can to help ourselves. I have done this, wasted so much money and burnout.

I hope that my response somehow helps you lovely. It’s so upsetting and unfair and confusing to live with Endo. The NHS is broken and limping along. As I’m unwell too, I do sincerely hope you get symptoms, side effects under control as you might pick up. It’s the waiting and the toll on our mh that can have a devastating impact on our lives. Especially at this time of year when we can’t do Christmas things and join in with what we want to 💔

Here’s to all of the Community on the struggles bus with us xxx

[Aimz99 in reply to 635703]

Thank you so much for your help. I am definitely going to get a second opinion! I only had a phone call from the specialist. I never felt that the zoladex was the right option for me but I just thought anything to stop the pain! I am on Tibilone but I am struggling too much with the side effects from the Zoladex. I have heard about some trials of women being offered the drug they give to people suffering from from severe arthritis as it prevents inflammation but as there is not enough information about Endo it is so hard to know what to do and also what we can ask for. Thank you for your help - it means so much and I will go on to the link you suggested and get a second opinion. I hope you have some relief from your pain and mental health difficulties. It is difficult, I know but I pray that something will come to light soon and our health care system will have funding put into it and they will take women's health seriously. Wishing you the best xxxx

[635703 in reply to Aimz99]

Hu-mera (spelling?) has been tested and some in The USA are using it. I think the trial was done in Belgium? It’s used to treat Crohn’s disease aswell as arthritis. It’s very expensive to the NHS. I asked my Gastroenterologist if I could have it because of the Endo with the Crohns and they don’t just switch biologics without test results, trying other (cheaper) options. I have Crohns disease too 😩

If you take some academic papers to the appointment that would substantiate and justify that treatment option, it’s worth a try.

Nancy, from Nacy’s Nook is married to an Endo surgeon. So note this because her bias will always be to recommend that.

All the mixed stories we hear about surgery holidays to other countries. It’s so mixed with being amazing and then the horror stories aswell. You never really know the truth. Just my thoughts.

Hugs from me 🫂 if you like them x

[Aimz99 in reply to 635703]

Oh bless you, you are really going through it. I am sorry :(. It still baffles me how they can say that something is too expensive but it could help someone's life and to survive and have better quality of life! It is hard to know what to believe but I just hope there will be more and more information coming out and I am grateful to the women who share their stories as it seems to be how we are managing to get through to better treatment for endo. I will have a look and see if I can find the research papers as if I remember correctly - it allowed some of the women in the trial to live a relatively normal life without being pumped full of hormones and being able to have periods. Thank you again for your support and helpful information xxxx

[635703 in reply to Aimz99]

Thank you and agree with what your saying x