Need to make a decision!

Hi all,

I hope someone out there can help me.

I have been diagnosed with Endo for the past year after suffering from severe pain for years, as well as non stop 'black' bleeding. A year ago I had a laporoscopy & hysteroscopy which is where the endo was found. The Doc managed to get rid of most of the endo deposits. After a while the trouble was back, so was advised to take the contraceptive pill, again the trouble came back. I was then given hormone implants (along with HRT) every 4 weeks but have had to stop these after 4 sessions as I'm still bleeding black for around a week.

The pain in the left side of me is so intense I really cannot cope any longer and sex with my fantastic partner hurts, especially afterwards. Last Monday I thought I would have to go to hospital, the pain was that bad - I was only sitting at my desk at work!

On Friday gone, I had an appointment with my Gyn doctor, he went through all of the options left open to me but to tell you the truth I was so upset and fed up with the pain & bleeding that I didn't ask questions. I'm back there this Friday with my partner as the doc wants to see us together to discuss a hysterectomy.

My doc has said that the pain may not go away even with a hysterectomy - is this true? I would be keeping my ovaries as I'm 32. He has also said that I could have an implant in my womb but I'm sick of taking tablets, having operations and having implants stuck in me I'm not worried about having the womb taken away, I just want to be sure that it would be the end of the pain (and the bleeding lol )

I'd be eternally grateful if anyone out there could help me......

Thank you!

Hi Jools and welcome

You'll find many other gals here who are suffering with endo, like you. It is a truly nasty disease.

It is true, as your gyn has told you, that a hyst may not "cure" the endo or eliminate all of your pain. I know this is not what you want to hear.

While some gals do just great after a hyst and never have a recurrance of endo, others are not as lucky. There's really no way to know in advance what your outcome will be. If you keep your ovaries, that may increase the chance of the endo recurring. On the other hand, you are very young to have your ovaries removed and more likely to have greater difficulty adjusting to synthetic hormones (or even bio-identical hormones, for that matter). Some gals find that they can't take hormones at all without the endo flaring up again.

We have compiled quite a few links to other websites that have detailed information about endo. I'm providing a link to our Resources Forum where these websites can be found. I encourage you to keep reading and researching your options. Here is the link:

Link to Resources Forum - Endo and Adeno Websites

It's also a great idea to get a second opinion from another gyn, if that is possible for you in the U.K. A hyst is major surgery and it's always a good idea to get a second opinion (if possible) before making a final decision about something like this.

I truly wish I had better news for you. I had a TAH/BSO 2 years ago primarily due to severe stage 4 endo. I'm doing very well now, but I found I cannot take estrogen without having endo symptoms return. I'm much older than you (now 48) and I'm lucky in that the menopausal symptoms are pretty slight at this point. All in all, I'm doing well and the hyst was a good decision for me. But there are no guarantees that you will be as lucky as I have been.

Keep reading, keep asking questions, and make the decision that feels right to YOU. We'll do our best to provide support, whatever you decide. Sending hugs your way. Keep us posted on how you are doing.

Beth

Thanks so much for this - I really appreciate you taking the time out to reply.

I have just met a lady at work who had a total hyst 4 months ago and she was really helpfull too.

Just one thing - does anyone know anything about an implant that is put in the womb to stop the bleeding? This is one of the options I have open to me :confuse:

I am at the hospital tomorrow night to maybe come to a decision - to be honest I'm erring towards a Hyst now after all I have researched and what I think is right for me. I want to feel well again and enjoy my life

Any advice about the womb implants would be great.

Take care

Hi Jools,

Could this "implant" be the Mirena Coil? I never tried this, but have read posts about it here on the Options forum. I believe it is a type of IUD that has progestin - to stop the bleeding.

If you so a Search using the Search button at the top of the screen, enter the keyword "Mirena" and you'll receive a list of threads that mention this. Hope this is what you are referring to (?)

Please stop back and let us know what you decide. Sending hugs your way.

Beth

Hi Beth,

Yep, you are right, it was the Merina coil. I saw the doc on Friday and he said there are two options now open to me - the coil or the hyst. He said the coil would help for the bleeding as he is tying the pain with the bleeding (it is actually at any time, especially after sex - always on the left side as if my ovary is about to explode) To be honest I'm not bleeding really heavily, it's just that its black smelly very unpleasant 'gunk'. I also get very big clots which are a wee bit nasty.

I have researched the coil following on from your advice, and I just don't think it will suit me at all. I am getting quite down again due to the fact that I'm bloated & in pain again and I just feel really really tired and just want to cry for no reason other than feeling sorry for myself..... I hope I don't sound *too* pathetic!!

I have had enough. So, tomorrow I will be calling my doc to organise the date for surgery. The surgery my doc says he will do is the partial hyst - he will make an incision at the bikini line, take the uterus and leave the ovaries. He anticipates that I will be back to work in 6 weeks, so that is really positive

Thank you

Hi Jools!

The "black bleeding" that you describe is very characteristic of adenomyosis, particularly with the clots. It's where the uterine lining has actually infiltrated the muscle wall itself, where it bleeds, causing all sorts of pain and havoc .

Have you had ultrasound to make sure that the ovaries are OK? Your pain sounds very much like maybe there's an ovarian cyst lurking in there somewhere, and that is a question that you might want to have answered prior to your surgery. You might want to ask about a supracervical option; it's where they leave the cervix in and the healing may be a bit faster. The down side of it is that you might continue to have some "mini-periods" since you're leaving your ovaries.

(((Beth))) has given you excellent advice about the idea of the second opinion. I realize that it's a bit more difficult in the U.K. but it really can make a difference. Different doctors have very different approaches to the surgery sometimes, depending upon their training and experience, and it's worth a fresh viewpoint on your situation anyway.

Good luck; you're entering into an intense period of decision-making! It's a good thing that your co-worker has had a hyst (why don't you send along the link to the site here? We have lots of ladies around here and in the Hormone Jungle who've had their hysts some time ago...). However, keep in mind that hysts are done for a variety of reasons and in a variety of ways, so don't be surprised if your experience is different from hers. I heard a lot of "it was the best thing I ever did for myself" from women...but then found out that they'd had fibroids, a completely different situation than my severe endo and adeno. So, "your mileage may vary" and keep that in mind when talking to anyone who's been through this! Some of us do very well; others, particularly those of us with endo, are more prone to mixed results.

If you do have adeno, the hyst really is the only solution; the IUD is ineffective for that particular problem. Good luck, though, whatever you decide; and do your research with the Resource links here, they'll help enormously!



audrey