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Endometriosis-Cyst removed-what to expect next? Help pls.

(10 Posts)
Bellybadge Sun 30-Jun-13 13:03:17

Im sorry this maybe long, but I could just do with sone advice, I have googled and looked online but still rather confused.I have recently been diagnosed with Endo, started with severe right side abdo pain and complete lack of energy and fever, GP said it was just a bug/flu. Pain continued and got worse, was referred for a ultrasound scan which revealed a cyst near right ovary. In the space of 24hrs I was told that they needed to operate and an operation was carried out. Was told they couldn't do keyhole (laparoscopy?) surgery as cyst too large so they made a vertical-incision from my belly button down to my pubic area and removed a 15 cm chocolate cyst and my right ovary too.

I'm still in shock but trying to make sense of it all. The consultant wants to put me on a 9 month course of Zoladex (sp?) with no Hrt. He also said that they would be looking at a hysterectomy as a long term solution. I refused to have the Zoladex at hospital because I'm scared of the side effects ( I read the leaflet that came with the box) and generally very confused as to what will happen if I get the injection. I am 35 with 2 v young children, the youngest is only 8 months. I have had various aches and pains since the birth of my first child, including regulars painful periods, back pain and strong stomach pain, bit like a tummy bug but a lot more painful. GP thought it might be IBS.

Has anyone had Zoladex? If so what was the side effects? I know it sounds vain but Im scared of losing my hair and putting on weight, I have been losing weight since beginning of the year through healthy eating and exercise and so far lost 4 stone, 3 weeks ago I felt the healthiest and fittest I have done in a long time. I have an appt with my consultant in 3 weeks. At the hospital my consultant's just dismissed pretty much every question I had. I started crying when they told me they removed my ovary and he just said I was lucky to have 2 dc as many women with endo have probs conceiving. I am very grateful for my children but I didn't neccessarily feel "done" with my family just yet.

LilQueenie Sun 30-Jun-13 13:13:57

I had pretty much the same though it took 9 months to get it sorted and the doctor was dismissive. Zoladex is one treatment. There is another which does the same job and was better in my case. You could ask about it. Pretty sure it begins with a G Goselin or something. Zoladex I cried and was emotional. With the other one it was 6 months of bliss. Never felt so normal in my life. The injections will either mimic pregnancy or menopause but it doesnt mean you will have every symptom. I felt slightly hotter. Only symptom for me but I was wasnt sweating excessively.

The other good news is the pain should go. Have you had pain since the op? Strangely it stopped for me at that point for a few years. Did they remove one ovary or two? I only had a quarter of an ovary left. 2 rounds of IVF and ir worked. Its not the end. Incidently try taking the first shot of zoladex to see how you get on. It lasts a month and they may switch you to a different type if you have problems. Good luck smile

Bellybadge Sun 30-Jun-13 13:25:43

Hi lilqueenie, they only removed the right ovary and left the tube, they said HRT wasn't option to offset the side effects of the Zoladex as it would negate the effects of the injection and contribute to the Endo ( or something like that- I was on morphine at the time)

I started what seemed like my period yesterday, so been having crampy type pains for a couple of days, but the flow hadn't got stronger if that makes sense. So not sure if its a proper period or not.

LilQueenie Sun 30-Jun-13 13:39:04

Thats strange as I was given the opposite advice. Could you perhaps speak to them again to get things clear as you were on morphine at the time and ask for other options that may be possible. I was 22 at the time so hysterectomy wasnt an option but I have a feeling they said that to you because you already have children. Have you had a look for support groups? There are quite a few endo groups out there.

As for future children you have 2 already and I would bet you had the endo even before they were conceived so dont worry too much.

The bleeding may be because they were rooting about or it could just be lighter due to having the cysts removed. I think mine went from about 8 days to 3 afterwards shock

Bellybadge Sun 30-Jun-13 13:55:38

I am hoping to get more answers at the next appt but the dismissive nature with which consultant spoke to me last time puts me off, definitely think they mentioned hysterectomy because I already have children.

Pandsbear Sun 30-Jun-13 18:47:32

I had a 6month course of zoladex last year. Quite similar to you in that I was told I needed to have it (straight) after a lap to remove an endometrioma and half an ovary and lots of endometriosis. I ummed and ahhed for very much the same reasons as you.

I went ahead as the consultant just said take it one month at a time, if the side effects are too grim etc just don't have the next injection. So I always felt there was a 'way out'. I did the whole 6 months but the last 2 months were hard work. Side effects: cracking - the worst ever - headache for 2 weeks after the first injection. Had a very few hot flushes after about month 4. I did not put on any weight at all, I lost weight but looked scrawny and dried out. Skin dry dry dry. No libido at all, felt old and rough. Plus side I had no endo pain, no sore abdomen, no bleeding felt normal for the first time in a couple of years.

I also bled for about 2 weeks after my lap - they will have done quite a lot of work in there in your op so give yourself time to recover.

orangeflutie Sun 30-Jun-13 21:17:50

You have been through a lot in a very short time. I would say it's best not to rush into anything you're not a 100 percent happy with.

Zoladex may or may not be the best thing for you. If you do have any worries or doubts, you're entitled to see another consultant gynae, especially if you feel your current one is dismissive.

It's important you feel like the person you speak to has your best interests at heart.

AttilaTheMeerkat Sun 30-Jun-13 21:35:42

Many GPs do not recogniose endometriosis even when presented with clear evidence of it. Again IBS was mentioned, endometriosis is often misdiagnosed as IBS by some GPs.

It was also poor practice on the hospital's part to speak to you when you were on morphine; they should have made a follow up apt a week post op to discuss the findings of the lap.

I would seek a second opinion in such circumstances before committing to anything like Zoladex as it can put you in a menopausal state. is a very good website and may be of further assistance to you as well.

Bellybadge Tue 02-Jul-13 19:14:27

Thank you for alk the replies. I have had a look at the endo website, lots of info to read through smile

I saw the consultant today. He was much more attentive and less dismissive than he was in hospital. He told me that I have grade 4 endo and that it is on my bowel, uterus and that everything was stuck together. He mentioned the treatment options and said that a complete hysterectomy would be the only way to stop the endo and if I had completed my family they can do that now, or if I wanted more children I could complete the 9 month course of Zoladex wait for my periods to come back and try for another baby, after which they could do a hysterectomy.

He said I could also refuse all the treatment options and do a wait and see approach but that the endo will be getting worse, they can remove any more cysts if they occur and cause pain.

I am now more confused than ever as to what my next step should be. I asked about Zoladex. Side effects, mentioning the poss weight gain, but he said I should've gain weight but hot flushes and night sweats were common.

Bellybadge Tue 02-Jul-13 20:37:29

*shouldn't gain weight but can expect hot flushes and night sweats.

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