Help! 23 years old and panicking...

[brightbunny]

Hi all, I'm 23 years old and had my first diagnostic laparoscopy back in February this year. When I was diagnosed with minor endo, I actually celebrated, because at last I had a diagnosis. However, the symptoms have returned. I am having trouble with my periods, and having severe chronic pain again most days. I didn't really research endo before my diagnosis, so was shocked about the whole infertility situation. Can anyone give any advice on how to deal with this? I'm going back to hospital on the 3rd June for a check up too and don't really know what to expect.

[Hidden]

I can't help you much with the fertility as I don't have kids, and I just had a complete hysterectomy with more endo removal. There is always hope that you can have kids. Many, MANY women do give birth while dealing with endo. And who knows, you might get a reprieve from the endo pain. Just be aware that in order to have the baby, you'll have to suffer a bit with the pain. But I bet in the long run it's so worth it.

Yes, it is so lovely being diagnosed with a valid reason for your pain. It makes one so happy and light when you have a name for it. Then reality hits, and it's like "well shoot, now what do I do because I still hurt."

There are several things that can happen at your next visit. If you have never used birth control before for pain relief, this is usually the first step. They will probably make you run the gauntlet of b/c to see if they can find one just right ( I went through 2 years worth, and nothing worked). Diet and exercise might be discussed, or homeopathic ideas as well. Next step might be the menopause shot.They might discuss having another surgery to clean up what was missed. They might throw in there to try and get pregnant or have a hysterectomy to try and stop the pain (old-fashioned ideas that most doctors still spew out).

You have choices as to what you do to your body. And you always have the right to second or even third opinions. If you are uncomfortable with your doctor knowing this, then don't tell him/her. But I would tell the doctor you go see when you set up an appt, that it is a second opinion appt. Do your homework online before going to your appt as to which birth control you would feel comfortable taking, which menopause brand shots you feel would work best for you, etc. Just don't take the Danazol, it causes irreversible damages to your body. I don't think you want to be the bearded lady of your neighborhood. The worst that can happen is that your doctor tries to make you feel stupid for bring up your concerns and ideas of what you are willing and not willing to do. But you won't, you'll feel empowered that you know so much about endo (if not more then your doctor does) and what you are willing to try. There were quite a few times I grilled my current obgyn about things that I wanted to look into trying. I think she disliked my notebook by the end of my visits.

I feel for you, I really do. I just had two surgeries in barely over 2 years because of daily pain. I am worried about my first 'period' after surgery. Last year's period immediately after surgery was the worst I had in a very long time.

[brightbunny in reply to Hidden]

Thank you for your reply! Really appreciate it. I have been on Dianette, the birth control pill for over 2 years now. I have never had any problem with it but the consultant asked me before my operation if I would consider the coil (only if they didn't find anything) but I declined. I haven't heard any good reviews about it and thought it would mess up other things! I'm lucky in that I have a great doctor who has guided me through this whole process where everyone else kept dismissing it as IBS. Grrr! HE has been great, I couldn't ask for better. He is the one who pushed the operation etc so I owe a lot to him otherwise I still wouldn't know now. No hormone treatment etc, so won't be the next bearded lady fortunately... Would end up looking like the female version of my other half! was the second operation easier in any way? How did the two differ? I'm pretty sure I'll need another one at least...

[Hidden in reply to brightbunny]

My very first lap was about 5 years ago. My then doctor found nothing, which was upsetting because I still was in pain. That lap I was out of work for 1 week, because I had nothing really done.

Last year's lap was different. I was diagnosed with endo, had it burned out and had my right ovary and tube removed. I was out of work for 2 weeks. I did have to call off the first 2 days of my first period after surgery, the pain was that bad.

This lap was the most unusual, as I decided to have a hysterectomy. I ended up having a complete hysterectomy, more endo burned, my left tube removed, and the removal of my right ovary again (turns out I had Ovarian Remnant Syndrome). I was suppose to have 6 1/2 weeks off, but my work wouldn't allow it and now I am going back tomorrow at exactly week 5. This surgery was by far the worst on me. But that I think is more to the hysterectomy then anything else.

Just always be aware of your bowel movements after any surgery. I can speak from experience that constipation and fresh internal stitches and/or burn marks do NOT mix.

[brightbunny in reply to Hidden]

I was out of work for one week after mine. The pain was horrendous. I have three scars, one which was the entrance obviously. It's a daunting thought that I'll have to have it done again someday. How do you feel about it all?

[Pinknickers]

Hi Brightbunny. Youre right to be pleased you have a diagnosis; it's better to know your enemy. Don't panic about fertility either. Many suffers struggle to conceive, but many also go in to pregnancy. my main advice is get yourself under the care of a GP with Endo interest (many are dismissive because they don't understand it) & get yourself refered to a BSGE accredited centre.

Good luck. You will have good days and bad days. Remember knowledge is power.

[brightbunny in reply to Pinknickers]

Its hard isn't it! Such a lack of awareness, people don't have a clue. Luckily I have a great doctor who has supported me for years. I even wrote him a thank you card for all his help. He changed my life. What is a BSGE centre can I ask? Haven't heard of one before. It's great to have a diagnosis. I first started experiencing all this when I was 19 so it was a huge relief. At the time all is done is researched endo, and the symptoms. Never anything above that.

[Pinknickers in reply to brightbunny]

BSGE is the British Society of Gynaecological Endoscopy. They regulate approved centres for dealing with Endo, makes sure they have certain specialities with particular interest &/or qualifications, & do so many operations per year to keep their skills. If you go to their web site you can see a list of provisional and approved centres It took 21years and a fantastic surgeon at a provisional BSGE centre to get my diagnosis.

It's an awful disease that ruins lives. Hopefully people will become more aware of it now, and there's a lot of research going on.

Good luck with your fight.

[brightbunny in reply to Pinknickers]

thank you for your reply. I've had a look on their website, it's really helpful. there is one in oxford which isn't too far away from me! what can they do that gyno at the hospital can't? if there are any differences I may get in contact with oxford. I am lucky to have got a diagnosis at such an early age... I thought I was one of the few who took years to diagnose but I realised since being on here etc that it can take a hell of a lot longer!

[shali1981]

Hi. Sorry to hear your symptoms have returned. Endo even minor can be life altering.

I was diagnosed after years of pain and coupled with pcos. I had a TAH last March for endo/adeno/pcos! Trifecta lol!

As for the infertility me and my partner tried for 7 years with no luck. We went to our Dr. for a referral. I had a lap and dye in 2009 and I was told that I would only conceive with IVF. Clomid didn't work and I was scheduled for IVF. In August 2010 we moved town's so we stopped stressing about IVF whilst waiting for an appointment at our new Drs. In December 2010 I had an appointment to schedule my treatment. In January 2011 I was admitted to hospital following a week of severe vomiting to be told I was five weeks pregnant

I went from being told I would never conceive naturally to doing just that. Don't give up hope and do seek help early. This is a very long process. My 3 year old daughter is living proof that even with only one tube blocked with endo and pcos miracles do happen xx

[Mabes in reply to shali1981]

Oh that's a lovely story Shali! Thanks for sharing.

[brightbunny in reply to shali1981]

That is such a wonderful story! Thank you for sharing it with me, wow. Shows that it really can happen, huh. I would love to start trying in a couple of years once I hit 25, but I'm just scared that even then I might have missed my chance, I don't know how it works!

[shali1981 in reply to brightbunny]

I am happy to share if it gives someone hope. We were 26 when we began treatment. But I would not worry about it until you have been actively trying for at least 12 months. If after that amount you have no joy see your GP. There are tons of options

[brightbunny in reply to shali1981]

Thank you I just wonder if it would be worth starting a little earlier than usual. Obviously not straight away, but just as a precaution so I know I'll be able to have a happy healthy pregnancy. It's been on my mind an awful lot because all websites do is scare you.

[shali1981 in reply to brightbunny]

Websitescan be informative and devilish all at the same time. People hear Endo and instantly think that having children is out of the question. But it is not always the case. Admittedly living with endo and the pain and symptoms it can cause certainly makes the baby making process harder in every aspect but it doesn't slam the door. There are some women in groups I have spoken to who have said that pregnancy has given them relief. If you are concerned about the effect that it may have then I would recommend speaking to your GP. They will be able to advise you where to go from there. At least you will be able to discuss your concerns and make a plan for the future if you don't conceive naturally xx

[blessababy in reply to shali1981]

Shali...this is so beautiful! I have endo cyst on left ovary, even got one surgery..but it reappeared We are TTC since last one year, had one failed IUI too..seems nothing is working. Endo and lap has left me with a very low AMH. I try to keep up the hope but it is so difficult! I am now thinking of moving towards IVF, I am just praying for some miracle to happen now! I just pray that no one had to go through this struggle.

[Mabes]

You said you had a diagnostic lap. What treatment did you have? Was the endo excised or layered away? Are you on any hormone treatment?

[brightbunny in reply to Mabes]

It was lasered off... No hormone treatment

[Mabes in reply to brightbunny]

The laser doesn't always destroy all the endo implant (have a Google - laser versus excision). Also did your gynae discuss hormone treatment like the Mirena or a POP bcp? Using a hormone therapy post surgery attempts to limit or slow further endometriosis developing by countering estrogen and limiting bleeding/periods. Perhaps you can discuss this at your appointment.

If you look at the member Lindle's posts you'll see she gives advice on how to get properly treated - you might find that helpful.

Fertility-wise, I read that 50% (approx) of women with endo experience difficulty, so it's not an automatic thing that having endo will always impact fertility. I get the impression that struggling to conceive relates somewhat to which organs are affected, but even then there are always exceptions.

[brightbunny in reply to Mabes]

Thanks for your reply! I was asked if I'd like to use Mirena if they didn't find anything in the diag lap. I said no, but they did find endo obviously so it didn't matter anyway. I haven't ever heard good reviews about the coil and really was unsure about the whole thing. I am still happy with my birth control pill and have even been taking it three months non stop so I now only have four periods a year which is much better than twelve!

[Mabes in reply to brightbunny]

Reducing your periods should help, so that's good.

There are some members on here who've had great success with the Mirena. I've got one and I'm not unhappy with it, although I wouldn't say it was my miracle cure or anything. The beginning was quite horrendous as I bled heavily for weeks, but it gradually lessened and now I have very little bleeding (which is great as I have suffered with heavy periods for years).

[Bobbyt23]

Hi there, first of all try not to panic I had been suffering terrible pains for almost a year and last November I had laporoscopy and dye test to check my fertitility I'm 27 and have no children. They found moderate endo and layered away what they saw and also said my tubes were clear after the lap I fell pregnant straight away sadly had a misscarraige but I am now pregnant again 7 weeks. We were trying almost a year with nothing so the lap is a great thing to have done!! I believe that if its caught early then it can be cured, may just be a case of having a few procedures done x

[brightbunny in reply to Bobbyt23]

I hope so... Thank you for your reply :). How did the dye test come about? I've only been aware of it since being on here. I am sorry for your loss. It's great to hear that you've fallen pregnant again though. I've heard that you're more likely to get pregnant in your first year after a lap... Wonder if that is true.

[Bobbyt23 in reply to brightbunny]

Yep it's true, there aim is to get you pregnant soon as if you are trying. I was worried about my fertitility as we had been trying 8-9 months and nothing so he done a dye test to have a good look in my tubes. I believe if it is caught early then you will be ok I had exactly the same concerns as you did, I thought I'd be infirtile it was horrible but try not to worry to much x

[brightbunny in reply to Bobbyt23]

It's just pretty worrying, and the fact you'll have no idea if you are fertile until you become pregnant is quite daunting too! It's just pushing for things I guess, as long as you're comfortable with whatever the outcome will be x

[jessoxo]

hi im 21 and was diagnosed two years ago also with minor endo. i dont want to put a downer but diagnosis is just the begining of a long road. your gyne will try different hormone treatments to try and find which one best suits you and reduces your pain. make sure you see your GP to get correct effective pain relief. try not to worry about fertility theres lots of things out there now a days to help improve your chances. if u have any more questions feel free to message me i understand how confusing and lonely endo can be. all the best

[brightbunny in reply to jessoxo]

Its awful isn't it. Such a pain (literally) from day to day. I know it's going to be a life time thing which isn't great but I can get through it. Just as long as you have people that understand. This is why this website is so good!

[sw1996]

Hi I feel I can relate because you are nearer my age. I am 19, got 'diagnosed' 2 years ago this sept. I say diagnosed because apparently now I don't have it. Like yourself when they said I had it I celebrated as I was having so many problems. Since my periods started age 13.

When I researched and found infertility I was absolutely devastated. But not all women suffer .. There is so much new technology these days to try and help.

If you want to PM me I would be happy to see if my story is anything like yours xx

[Dollar1414]

Hi there im 20 I had my endo excised four months ago, still on a long road to recovery with not much pain relief yet in regard to my symptoms pain during intercourse, unusual cramps ect, as for fertility, my endo was mild, but I actually concieved while I had endo before I had it taken out, many women are still able to have children and normal pregnancies , and hopefully one day it won't be an issue with you , I also declined the coil , I'm am taking my pill back to back hoping it will bring some relief, Goodluck with everything x

[am35]

Hi there, this is my first post on here, I'm not usually one for using online forums but I was impressed by the supportive nature of this website and its members.

I had very severe endo and had an operation last year to remove it from all affected areas in one go. It seemed it was a fairly new approach and involved bowel, bladder and gynae surgeons all participating in the operation. It lasted 7 hours, and I was off work for a long time to recover but it was my best chance of reducing the risk of it coming back.

Of course, I have no idea yet if it has worked entirely..... We have been trying for children and have been on fertility treatments since then, so my body hasn't been 'normal', but I would say that I feel in much less pain.

In terms of fertility, we are still waiting for our baby dreams to come true, but the surgeon did say that there is no reason we can't get pregnant and in fact pregnancy would help any endo symptoms.

So I send you all warm wishes as I know what a long and painful battle both endo and fertility issues can be.

Good luck everyone and maybe ask your doctor about this wider approach to surgery for endo.

Xx

[SJ1992]

Hi I'm 23 and had my lap last year. Like you my symptoms returned and I was offered the mirena but declined. I struggled on with the pain until my next appointment 3 months ago. I was offered prostap injections, which will put me through a temporary menopause. As unpleasant as the side effects are it's really helped not having a period for 3 months. It's not guaranteed but was told it could get rid of some of it due to the lack of hormones . I'm terrified about the infertility but I'm hoping these injections do the trick and get rid of some of it. Really hope you get the treatment and answers that you need.

Good luck x

[blessababy]

When I was diagnosed with endo, I was devastated. After lap, I was relieved that I would not have to suffer the pain and conception would be easier. But just after three months, the cyst reappeared and I gave up all the hopes...my real struggle started then. I knew that repeated surgeries are not going to help. My AMH is very low now even to have a successful IVF. Though I never had any bad eating habits but now I am very careful about my diet and practice yoga for infertility. Seems my endo has not got worse over the time. I am giving myself some time to relax and then I am thinking of going for IVF before it is too late.