Gynae said goodbye. What now?

[memyselfi]

Had a very bad day today. Issues unrelated with endo coincided with my check up with my gynae.

Three months ago, which was 6 months after my third lap and insertion of Mirena, I went to my GP in desperation and asked for a second opinion.

Long story short, today I went for 9 month check up with gynae and it didn't go well, in fact we rather fell out with each other. I told him I didn't want zoladex or total hysterectomy and he has signed me off his list.

What do I do now? It's very scary to think that if this gets worse, I have nowhere to go for help.

I so want a female gynae who understands what I am talking about.

btw he told me the morning after my op that he couldn't remove 2 patches of endo so I definitely still have it.

[jojo777]

I would suggest you go back to your GP and ask for a referral for another endo gynae if you wish to see a gynae again soon for a second opinion, options etc. Make sure you get all your medical records so the new gynae has everything. You could do your own research and find a good endo gynae in your area and ask your GP to refer you to the one you chose.

If you think that you can manage and wait and see if endo grows more and if it causes more problems (more pain etc), then you can go back to your GP only and ask e.g. for good pain relief.

Just remember no one guarantees that the endo left inside you will grow more or become more aggressive, in some cases it stays as it is, it is totally unpredictable and even the doctors dont know, every woman is a unique case. xx

[Sunflower846]

Shocking behaviour i would defo get refered to another gynae! He should never had said that to u. I dont want hormone treatment either but i am in the process of losing my right ovary if i refuse so stuck decision for me just now but no one can force u to do anything. Infact i would put in a complaint to the gynae deapartment or the NHS. Gd luck xxx

[memyselfi]

Yes but if I am refusing treatment, which in effect I am, then he probably has to sign me off as there.s nothing else he can do for me in the form of physical treatment.

I was just a bit shocked that that was it, he is the most experienced endo specialist in my NHS area and so I feel like a door has slammed shut and I am on my own now.

[Impatient]

No you are not refusing treatment full stop, you are refusing specific medication which you are entitled to do without jeopardising the right to try other ways to tackle endo.

You have not ruled out more surgery, have you?

The gynae can only offer you meds and surgery not miracles. The surgery offered depends on his or her skills in that field.

If they cannot operate then you need to be seeking a specialist surgeon who might be willing too operate, and the gynae is right to take you off their books as there is nothing more they themselves can do for you.

Remember there is no cure, even a hysterectomy doesn't 'cure' endo.

It's about managing the disease as best as you can.

Ask your GP to refer you to a female endo specialist if you can find one anywhere, (they are as rare as hen's teeth) or just a male endo specialist. Meanwhile with the mirena installed has that shown any signs of kicking in after 9 months and has that eased any of your symptoms?

If not, then perhaps it isn't just the endo causing the pains and you might need to look at other possible causes. Or the Mirena may be faulty (blood tests of hormone levels might give an answer on that score.)

It might need replacing or topping up with other BC pills.

Definitely push your GP to get you referred elsewhere for a 2nd opinion on surgery options.

All the medicinal options (BC and painkillers) can be arranged through your GP, and the BC pills and implants etc can be done through a family planning clinic too.

The gynaecologists are really only there for surgical options and possibly preservation of fertility and IVF if those are on the current agenda.

[cupcakegirl]

Did he say why he couldn't remove all the endo? I wonder whether, if you went to a better surgeon, they wouldn't have this problem - although of course it depends where they are.

You are within your rights to refuse specific treatments and I believe you were right to refuse a hyst, especially if you've never had any of the menopausal treatments and seen how effective they are.

Can I ask why you don't want to try zoladex? I'm just curious really. I know it has a pretty bad rep, but it's the only treatment that ever helped me - so much so, I stayed on it for two years. That was a mistake which has caused me some difficulties, but the treatment enabled me to go from being unable to work to getting a very demanding job and I felt great, even the side effects didn't bother me that much. Of course it's totally your decision, I'm just wondering

Endo patients where the gynae is considering a hyst need regular monitoring even if you're not having any active treatment, since symptoms and situations can change - to discharge you at this point is shocking behaviour and I would make a complaint. Ask your GP for a referral to a specialist - you may have to go out of area for this.

Good luck

x

[memyselfi]

He says he is an endo specialist and they are applying to become a specialist treatment centre atm. He really does have the best reputation of anyone in my area.

I don't want zoladex for the same reason you do: work.

I have finally got a job that I love. As it is in education I get regularly spaced holidays so I am able to rest and pace myself. My experience with the Mirena settling in was awful, really scary mood swings and bursting into tears all the time. That lasted over six months but seems to be OK now. I am terrified that the zoladex will kick off mood swings again and give me night sweats and poor sleep. I am still trying to repair some of the damage to my reputation that the mood swings from the Mirena caused me at work. I can't risk any more.

At the moment I can manage, even though I have no energy left for anything outside work. The Mirena at least means I don't have to struggle in with horrendous periods. When I'm not at work the pain just makes me want to curl up in bed, there are so many things I want to do that I can't manage. However, and this is something I think doctors with their good salaries and pensions often don't get, some of us have to make work a priority over health especially when this condition has meant we haven't be able to make enough pension contributions in the past.

Now, the zoladex will only last 6 months, and maybe take two before it works. So four months of not having pain but having other side effects instead and not feeling in control of my emotions again. Not worth it in my opinion. He does say that I could stay on it for two years, but I have a family history of osteoporosis, including of the spine, and I don't want to increase my risk,

So zoladex would only be worth doing if I was planning a total hysterectomy, but I have read of people who haven't had all their endo removed being much worse off after hysterectomy.

He did try to explain why he didn't remove the two spots, but I am confused because, of course, I got nothing in writing. I requested my notes but was told, 'I can't give them to you right now'. At the end he said he would send me copies of all the letters between him and my GP, but I've seen those and they are not specific enough, I want the actual notes of what was removed from where and what was left. Don't know if I'll get them.

I was a horrible consultation. I'm sure I was as much to blame as him, but I feel so miserable today (not at work for an unrelated, but distressing, personal issue today) If anyone else asks their GP to ask their specialist for a second opinion, please ,make sure you see the letter before it is sent. I think this letter created problems before I even went in.

Anyway, it's done now. I need to move forward somehow.

[littlebirdy]

Memyselfi, just wanted to say that you shouldn't have to go for treatment options you don't want. It is your body and although we all rely heavily on the professionals we are under our point of view and consent is most important. We all have different personal circumstances to consider and know our own bodies. Hope you are referred to someone else who is really good and is willing to look at other alternatives with you. My consultant even recommended diet change to me and a book on the endometriosis diet which I am about to try once I've got this damn prostap out my system! X

[memyselfi]

That's interesting.

I'm looking at this condition as something that will resolve itself in 5 years (I'm 45) so I really want information from my medical 'advisers' to help me make the best decision for my current and my future health. But I do want it to be my decision and for it to be an informed one. I want to be treated holistically, rather than have this condition treated in isolation.

I have no idea whether I am risking scarring my insides for ever by not having further treatment or if I'm doing the right thing. If I was younger I would risk going privately to another specialist to try to have it all removed but at my age I'm not sure if it is worth it

I know it is annoying for specialists when they suggest a treatment and I say I don't want to do it because I'm worried about it affecting something else. I get the feeling we are supposed to take advice on trust whereas I want to be educated and play devil's advocate until I am convinced. That is very irritating for them because I don't defer to their status and expertise, I want to use them as a resource instead.

But yes, I'm thinking the best thing would be to go back to my GP and talk to her about ways we could improve my general health, manage the pain and wait this out. Although I asked about painkillers before and don't get very detailed answers. Perhaps other people don't worry as much as I do about consequences.

[reception]

hi my consultant is miss gillian rose based at queen Charlotte hospital part of hammersmith hosp. she specializes in endo and she is really comforting and helpful.

[memyselfi]

Thanks for that recommendation.

I'm at a loss to understand why there are so few women or why a man would specialise in a field where they can never really understand even half of what their patients are talking about.

[LisaJFaith]

Keep asking for help, don't give up!

You are totally in your rights to choose what path you want to go down, best to make informed choice and ask for help than feel you are being pushed into something you aren't comfortable with.

I endured all sorts of treatments over the 20+ years of Endo and it wasn't until I was introduced to nutritional therapy that I found something that beat the pain for me. Everyone is different and you need to find what works for you.

Keep looking, ask for help, research and stick to your convictions - you deserve to be helped.